What’s breaking news about autism?
I’m an advocate for education, first and foremost. I always have been, long before my son Charlie was diagnosed with autism, long before he was born. While the subjects of the classes I teach are the languages of Latin and classical Greek, and of the ancient culture of the Greeks and Romans, at the core of my teaching efforts is to teach students to think, to use their minds, to figure things out, to draw on what they have learned to learn more. However “severe” or “high” or “low” functioning a child is, she or he needs to be taught and—though the process can be slow, and progress measure in small gains (a child can zip up his own sweatshirt; a child knows how to find the front and back of a t-shirt)—learning can and does happen. However “recovered” a child may be, she or he still certainly needs to be educated: Why is it that college is often cited as a goal that parents speak of their child attaining?
And yet the news about autism tends to focus on “treatment,” on medical and health concerns. Tonight you can read about Chiari malformation in a report by 7Online.com (ABC 7, in New York): Chiari malformation is a brain abnormality that can be ameliorated through surgery. “Alternative autism treatments” is the topic of the April 27th Ped Med article, which seems to make something of a case for chelation: “What is testing well with a growing number of parents and some doctors is chelation — arguably the most defended, and defamed, of the alternative options,” writes Wasowicz; mainstream medicine considers chelation “ineffective at best and dangerous, even potentially deadly, at worst” (Abubakar Tariq Nadama, who died in August of 2005 after receiving chelation treatment in western Pennsylvania, is not mentioned, though a May 2005 Generation Rescue ad campaign and news conference are).
The success of the surgery for Chiari Malformation and of chelation for removing heavy metal poisoning from a child’s body are noted and emphasized in the two stories noted above. But while some children have medical conditions calling for such treatments, they are not intrinsic to autism whereas, as I’ve said before and will again, every autistic child needs to, and can be, educated to learn to make their way in the world. Medical research and scientific breakthroughs make for good headlines (hence are “mercury poisoning, mirror neurons, and genetics” mentioned regarding the upcoming IMFAR conference: what about the papers that will be presented on education practices, epidemiology, language comprehension, and more). But what about a child finally learning to read words besides his name? to brush his teeth? to make his own lunch?
Actually those are headlines somewhere. Right here where a little learning is a big news story.
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POSTED IN: Education, Health, Neuroscience, Science, Treatment
29 opinions for What’s breaking news about autism?
Zaecus
Apr 28, 2007 at 12:55 am
Big news, indeed. :-)
Apple_M
Apr 28, 2007 at 5:08 am
“But while some children have medical conditions calling for such treatments, they are not intrinsic to autism whereas, as I’ve said before and will again, every autistic child needs to, and can be, educated to learn to make their way in the world.”
I totalally disagree with this statement. my sons medical conditions are directly linked to his autism. elimination of foods make him more teachable.
addition of some foods make him unteachable.
I know I will be shouted down an told thats is do to sensory overload. no verified study and so on…
I urged you break out of this ring and look at the wider picture many many autistic kids are medically ill, do not ignore them
Go find a family who are “treating” there child and meet them.
María Luján Ferreira
Apr 28, 2007 at 7:25 am
Hi Kristina
You say
But while some children have medical conditions calling for such treatments, they are not intrinsic to autism whereas”
Not in my son case, apparently, where surprisingly many of the so called autistic symptoms to diagnose under the DSMIV disappeared or were solved when the medical problems was properly tested/diagnosed/treated and healed.
The part of “they are not intrinsic to autism” I consider that it can not be concluded in one way or the other with the actual status of knowledge about autistic biochemistry/metabolism/neurobiology/physiology/impact of epigenetics. This is why I mention them as Concomitant medical problems to the autism diagnosis, for now.
, as I’ve said before and will again, every autistic child needs to, and can be, educated to learn to make their way in the world.”
For my son, the proper treatment of his many many concomitant medical problems made the educational approaches much more efficient and , for him, very much enjoyable than before. In fact, this approach made education and inclussion possible, even when both were designed for him and his own needs.
Zaecus
Apr 28, 2007 at 7:54 am
Tellingly for me, I have yet to hear a single parent of a neurotypical child blame their child’s allergies, dietary problems, digestive issues, or other such difficulties on their child being neurotypical.
Nor have I heard them say that their child, when so distressed or under other types of stress, becomes -more- neurotypical, but considering neurotypical bonding behavior, that is -exactly- what seems to happen, from my observations.
Since it’s -wrong- to be autistic, though, anything that makes it less obvious is automatically assumed to be ‘correcting’ the autism.
Zaecus
Apr 28, 2007 at 7:56 am
Commenting from my phone, and that appears not to have separated into paragraphs to me. If not, my apologies.
María Luján Ferreira
Apr 28, 2007 at 8:08 am
Hi Zaecus
You say
Tellingly for me, I have yet to hear a single parent of a neurotypical child blame their child’s allergies, dietary problems, digestive issues, or other such difficulties on their child being neurotypical.
I am sorry, but I consider that you misunderstood my post. What I have stated clearly was that many signals that were signals of distress, an altered sensorial system or pain, disappeared when my son was tested and treated of his concomitant medical problems. Also, what it is lacking is the scientific proof of the connection of several gastrointestinal immunological and physiological/metabolic problems with the genetics present in autism- and how epigenetics modulates it-, but there is an incredible amount of anecdotical evidence left unattended, unanalyzed and not considered.
Nor have I heard them say that their child, when so distressed or under other types of stress, becomes -more- neurotypical, but considering neurotypical bonding behavior, that is -exactly- what seems to happen, from my observations.
Stress can be of exogenous or endogenous origen, NT or autistic.
Since it’s -wrong- to be autistic, though, anything that makes it less obvious is automatically assumed to be ‘correcting’ the autism.
Sorry, but this is not what I said. What I have stablished many times is that in my son´s case, the diagnosis is present with a lot LOT of concomitant medical problems, a number of concomitant medical problems no doctor saw in NT child. It is not wrong to be diagnosed autistic or being autistic. For me what it is wrong is to not pay attention to the importance of the concomitant medical problems that can be present with an autism diagnosis- in terms of proper testing, diagnosis and treatment and this is a world of difference, the difference between a healthy autistic child or a non-healthy autistic child. What I am presenting is my experience of an improved well being (pain and distress signals decreased) and the fact that many of the aspects considered part of autism (hyperactivity, lack of (apparent)attention, sensorial problems, language delay, no interactions with peers) decreased when these concomitant medical problems were treated in my son´s case. If you are interested more to discuss, please contact me.
thanks
Harold L Doherty
Apr 28, 2007 at 8:16 am
Treatment and education are not exclusive concepts. That is a false dichotomy imposed by neurodiversity ideology.
Parents seeking treatments and cures for their childrens’ autism do not forgo education of their children while doing so.
As for news, it depends where you look. I have posted on my blog site many articles about autism and education. Most recently I have posted articles about educating autism in my home province of New Brunswick, Canada where, instead of wringing my hands in anguish over how others describe or report autism, I have personally advocated for education of autistic students. I have also posted a new story recently from Ireland where parents are fighting for funding for ABA based education of their autistic children.
With all due respect Ms. Chew you missed the mark with this comment, completely.
Apple M keep fighting for treatment and betterment of your autistic child. And please keep posting on the internet. Discussion of autism issues on the internet all too often caters to the whims of anti-cure extremist ideologies.
Harold L Doherty
Apr 28, 2007 at 8:42 am
Here are links to some of the recent autism education articles and comments that I mentioned in my previous comment.
http://autisminnb.blogspot.com/2007/04/autism-irish-protest-failure-to-fund.html
http://autisminnb.blogspot.com/2007/04/autism-therapy-must-be-funded.html
mcewen
Apr 28, 2007 at 9:54 am
You two are too clever for your own good! That little linky loop, certainly confused my bifocals, or is that my brain?
Best wishes
Kristina Chew, PhD
Apr 28, 2007 at 10:11 am
I read all your posts, thank much Harold, and can tell that we follow the same news sources—great to know someone is making the clarion call for education, which all of our kids need. As I wrote, I am an educator by profession and the many different students I have met in my classes (more and more on the spectrum) need to be taught in different ways: There’s more than one way to teach Greek grammar.
Kristina Chew, PhD
Apr 28, 2007 at 10:21 am
Apple and María, I’ve often seen some changes in my son and suspected they are in part connected to some food he has eaten, some supplement, and of course he is also on more traditional medication. All of these help him attend but it has been the case (and in this he is like Harold’s son) that an ABA approach has been very helpful. That said, ABA works best for Charlie with an emphasis on motivating him and also with a lot of sensory reinforcement.
Kristina Chew, PhD
Apr 28, 2007 at 10:53 am
I should note, as a teacher I do notice patterns in levels of energy when student are hungry or not—students in an 11am class tell me they are “tired” because they are hungry, and then students in the 1pm class tell me they are “tired” from eating—-my job to keep the class interesting.
María Luján Ferreira
Apr 28, 2007 at 11:27 am
Hi Kristina
for my son, I have never tried ABA. However, his progress has been extremely well under the proper treatment of his Concomitant medical problems- considering the opinions of the educational special /non-special teachers and doctors. MAny behavioral aspects solved because and concomitant with biochemical changes properly checked ( even many of them very ABA focused traditionally).
However, I consider that what is a basis of understanding is that we could use as much as tools as we can to improve our children´s life´s quality. What I do not agree is that this or that should be considered “the” treatment for now. ABA is an educational approach, not a treatment, IMHO.
If some aspects of ABA, Floortime or whatever approach rationally applied is helpful to the child under the team consideration of parents+therapists+doctors+well being of the child therefore it should be available as an OPTION. What I complain about is , although there are many options available, ONLY ABA is considered as THE option ( at least in my country) with the neglecting in advance of the “detective” work properly done that is needed to properly test/diagnose/treat CMP to the ASD diagnosis. And THIS is what I disagree with. However, I consider that YOUR experience ( Kristina and Harold) are important and to hear, such as OUR experience also , such as OTHER different approaches ALSO. What I do not see is the interest to understand WHY we have so many different experiences under the umbrella of the ASD diagnosis and how a true model of what autism is could be differently constructed based on properly designed trials considering the sum of anecdotical evidence to produce scientifically validated data to provide some answers.
Kristina Chew, PhD
Apr 28, 2007 at 11:37 am
I’m speaking a bit from seeing a lot of children here in the US do well with similar educational programs as Charlie and again I am a teacher by profession, hence I believe in teaching and what it can do. As parents, we always have to try everything we think we can help, yes?
María Luján Ferreira
Apr 28, 2007 at 11:49 am
Hi Kristina
I understand but my question is
a-How do we know the kind of CMP to an autism diagnosis in the total absence of a protocol ( a proper one) of testing of CMP to an autism diagnosis in the mainstreamed medicine? Forget for a moment the controversy around the alternative approach.
b-How do we know the impact of unknown medical conditions (CMP ) in the efficacy of ABA or any educational approach if the children are not being tested adequately?
c-why the consideration of the anecdotic evidence is not seriously taken into account to discard the useless/ not so serious and to improve the potential of proper diagnosis of the more serious to stablish a protocol of metabolic/biochemical/physiological/nutritional problems- related to the behaviors such as pica or many many others- considering different subgroups of children with different presentation of autism?
d-Why is a fight fight fight fight to properly test an autistic child for probable CMP in the traditional medicine? The assignation of some of the symptoms of my son to ” the autism” and my acceptation of this would have been extremely dangerous for his health.
e- Why a COMBINED protocol is not discussed ( not under the premises of CAUSES/CURES) but under the premise of BEtter health for autistic people of all ages, at least for now? science will tell the true importance of these CMP but for now , for me, it has been one of the most important aspects of the advocate I must be for my autistic son.
Leila
Apr 28, 2007 at 12:19 pm
I think there IS a subgroup of autistic children that have immune problems related to autism. However, this is not the rule for EVERY autistic child - certainly not the case of my son, who is healthier than his parents! The problem is that DAN doctors and some biomed parents want us to believe that autism always comes with gut issues and immune deficiencies; that ALL autistic kids need to be put on a GF/CF diet and be submitted to the same biomedical protocol. This is what makes me mad: to think that thousands of kids in this country are forced to eat GF/CF diets, to swallow up to 30 supplements daily, and do chelation, for no reason.
My advice is, find a GOOD pediatrician that will look at your kid’s immune and allergy levels, investigate the possibility of a food intolerance, but something that is geared to your child alone, and then come up with a treatment plan that makes sense for your child. You can buy supplements that your child may need in any health food store, you don’t need to buy them from DAN doctors.
So my child doesn’t seem to have what María calls concomitant medical problems; but I’d still like scientists to find a treatment that may go to the core of the problem and help his brain function better, and to find treatments for the other children that do suffer from gut and immune issues. While it doesn’t happen, we work hard on the educational approaches that are helping him a GREAT deal. I don’t think the focus on biomedical treatments is pulling money and even attention away from the educational research. They are different disciplines, and performed by different professionals. I’ve been reading stories on newspapers all over the country that discuss education, parents struggling with their school districts to get the best possible educational plan… I live close to the MIND Institute (UC Davis) and I know for a fact that they are working hard for finding the best treatments for both the biomedical and educational areas. Other universities are either working on both or each of those areas. I think we’re on the right path, and have great hopes for a better understanding of autism in the near future.
María Luján Ferreira
Apr 28, 2007 at 12:34 pm
Hi Leila
I do not find disagreement between you and me in general. Gladly, I have found not one but several in my city- and out of my country- but it is a struggle that many parents can not win because the doctors prone to work in this arena with open mind to hear the autistic child problems and to take them seriously are very very scarce.
BTW, and please I am only talking in general, we do not know for sure what can be subclinical in symptoms but present and hindering the best outcome - including me - because first you must know what to search, at an individual level and to know what to search the research should be done first.I also would want scientist to find a treatment that may go to the core of the problem and help his brain function better and this is not in contradiction with a rational approach based on biomedical, that is designed to help this with partial knowledge about autism we have today.
What I disagree with- to present the other aspect - is the dismiss in advance of the importance of the CMP in the brain function, of the transport/excretion of toxic and essential elements that should be properly researched considering autistic people of all ages and of the immune problems ( of several kinds) that can be present in autistic people, very much -probably- linked partially to genetics and affected by epigenetics.
Kristina Chew, PhD
Apr 28, 2007 at 12:50 pm
I brought up this topic because, besides all the research into the causes of and treatments for autism, families have many other more immediately pressing needs. For daycare (for us working mothers, for sure). For afterschool programs. For respite—-so one can do laundry, eat without having to keep a child from hurting himself, just stare off into space for a few minutes. It’s wonderful to hear about all the funds being raised for autism research, but families have a lot of needs now.
Phil Schwarz
Apr 29, 2007 at 12:04 am
Rubbish. “Neurodiversity ideology” does nothing of the sort.
You seem to think you can ascribe any position regarding autism that you don’t like to “neurodiversity ideology”.
Harold, stop trying to put this strawman over on people.
You don’t seem to understand, do you, that eventually, as your son progresses and ages, you’re going to need to be on the same side of many battles as those “neurodiversity ideologues” you make baldfaced false claims about now.
I hope that either you begin to see the error of your ways in this regard, or that the allies you will need as your son grows older are extremely forgiving.
Phil Schwarz
Apr 29, 2007 at 12:18 am
Maria said:
Indeed. Read some of what Amanda Baggs and others have written, about their struggles to get medical conditions seen and treated properly as such, and not swept under the rug because the patient is autistic.
If biological conditions are creating danger or distress, *treat them*. Don’t try to wrap “autism” around them; don’t try to generalize them in to some sort of unified root cause of autism; just *treat them*. As the medical conditions they are, that deserve attention, whether the patient is autistic or nonautistic.
What the people putting all their eggs into the “biomed” basket don’t understand, is (at least) twofold:
(1.) After the biological condition(s) causing danger or distress are treated, the child still needs education. And there are still likely to be differences in learning style and in relative strengths and weaknesses at various cognitive tasks, that require specialized approaches, supports, or accommodations.
(2.) There are still going to be differences in cognition, sensory processing, affective processing, and aesthetic and social proclivities that are *autistic*. It is the effort to eradicate or “cure” *those* things — not the factors creating gross medical danger or distress, nor whatever factors grossly impede learning — that pro-neurodiversity advocates question.
Kristina Chew, PhD
Apr 29, 2007 at 12:49 am
Leila, I like that you note the use of the word “all” in regard to what one hears from DAN doctors and some biomedical parents. There also seems to be a lot of finger-pointing, with both “sides” inveighing against each other for not understanding each’s different (and seemingly diametrically opposed) viewpoint.
It’s not so much the volume of coverage as the tone of it that strikes me as different from the tone with which scientific “breakthrough treatments” are discussed and marketed. Biomedical treatments are often touted (in the US at any rate) as potentially providing healing, recovery, cure (consider the recently published book by Dr. Kenneth Bock). I think it’s important to point out, as you and Harold and Phil do, that children need to be educated, and this education may require attention to different learning styles that require different approaches, attention to sensory needs, and so forth.
And I am with you on thinking we are on “the right path,” and think these discussions necessary for keeping us on it.
Zaecus
Apr 29, 2007 at 4:19 am
Maria,
Having read several of your comments, I’m not sure that we actually disagree on anything.
…and my comment was in response to what Apple_M said.
Zaecus
Apr 29, 2007 at 4:23 am
Kristina,
“It’s wonderful to hear about all the funds being raised for autism research, but families have a lot of needs now.”
How would an organization intent on meeting those needs catch up to Autism Speaks?
Of course, they could choose not to catch up, letting the well-funded monster continue on, but that won’t help anyone -now-, and it allows a lot of bad propaganda to continue to flood the social consciousness until autism=plague/horror/subhuman is really all anyone knows.
Harold L Doherty
Apr 29, 2007 at 8:15 am
Phil said:
“Harold, stop trying to put this strawman over on people.
You don’t seem to understand, do you, that eventually, as your son progresses and ages, you’re going to need to be on the same side of many battles as those “neurodiversity ideologues” you make baldfaced false claims about now.
I hope that either you begin to see the error of your ways in this regard, or that the allies you will need as your son grows older are extremely forgiving.”
I am taking care of my son Phil. Without your help. I also advocate for other autistic children, youth AND ADULTS.
There is nothing rubbish about what I said. ABA is used BOTH as a health and an education intervention. Ms Chew’s comments and neurodiversity ideology both try to say that you must have one or the other. The rubbish is found in ideological dumps where it is alleged it is presumed that because one advocates for a cure that one must therefore be excluding education.
I advocate for cures, treatments, better education and decent residential and health care for autistic persons, children, youth and adults, in my home province of New Brunswick. I get off my butt and try to do something about it. I don’t need you to tell me to do what I have BEEN DOING for 8 years. But I appreciate your genuine concern for my son’s welfare.
One of the basic problems in your comments generally Phil is that you presume that the parent advocates fighting for their own childrens’ interests know less about what is best for their interests than you do as a complete stranger who does not share their childrens’ life situations. It is a problem inherent in neodiversity commentary, autism’s vox falsus/falsa.
Kristina Chew, PhD
Apr 29, 2007 at 9:34 am
Harold, once again, vox is a word in the feminine gender in Latin!
Cur dextrae iungere dextram
non datur, ac veras audire et reddere voces?’
Vergil, Aeneid.1-408-9
“Why is it not given to join right hand to right hand, and to hear and give back true voices [words]?”
This is Aeneas speaking to his mother Venus, disguised as a huntress. He has been shipwrecked near Carthage on his way to Italy.
María Luján Ferreira
Apr 29, 2007 at 12:01 pm
Phil thank you for your answer.
You say
Don’t try to wrap “autism” around them; don’t try to generalize them in to some sort of unified root cause of autism;
You are generalizing here about aspects that neither you or me know because science about autism, and specially biochemistry/physiology/gene expression/transcription/epigenetics studies in autistic people is incomplete to say the importance of the health problems many times autistic children /teen/adults have.
If you read many of my interventions
1-I have never considered the discussion productive in terms of CAUSES as per se; in fact I do think that there are as much autisms as autistics. Genetics has an enormous place and it is unfortunate how epigenetics and environment impact have not been studied from the importance in autistic people´s biochemistry at all ages.
2-My anecdotal evidence demosntrated me that several of the symptoms used to diagnose autism disappeared completely under the proper treatment of medical problems properly detected and healed.My experience is valid, even when I am not generalizing.
Please do not do the same.
just *treat them*. As the medical conditions they are, that deserve attention, whether the patient is autistic or nonautistic.
The treatment”, if changes the overall situation, deserves enough attention. What autistics deserve- or better what I consider my autistic son deserves- is the respect for his condition to be properly considered in the overall, not in pieces.
What the people putting all their eggs into the “biomed” basket don’t understand, is (at least) twofold:
I have never put my all efforts in biomed; biomed, as many many other mainstreamed tools I use are these: tools to improve my son´s life quality and to give him the education he needs
(1.) After the biological condition(s) causing danger or distress are treated, the child still needs education. And there are still likely to be differences in learning style and in relative strengths and weaknesses at various cognitive tasks, that require specialized approaches, supports, or accommodations.
Sometimes , but sometimes there are also real improvements that make these needs minor. The problem is when the assignation is to this or that for sure. Placebo effect, natural maturity with age- that also brings changes at systemic levels, the proper treatment of CMP, the proper treatment of sensorial issues- if present- the proper emotional environment- familiar, school- the proper effort of education at school and in family, the consideration of the individual needs in the management of the social situations ( or not) are part of the potential improvement.
You are assigning in general to biomed what is the view of some particular group here.
(2.) There are still going to be differences in cognition, sensory processing, affective processing, and aesthetic and social proclivities that are *autistic*.
Surely
It is the effort to eradicate or “cure” *those* things — not the factors creating gross medical danger or distress, nor whatever factors grossly impede learning — that pro-neurodiversity advocates question.
I understand- and with this overall presentation I do not disagree with THIS kind of aspects. But in the same way that Í consider that today we can not say if we have ( or not) and epidemics, I consider that you do not know the impact of CMP in autism- at individual level- until you do not properly test/diagnose/treat them. My son, again had detected near 45 medical conditions.And the treatment of all this - plus the overall accomodation of family/school/environment- has changed his life for good enormously in terms of happinness and well -being for HIM.
The problem is when the discussion is presented in terms of “cure”- as if for example you can “cure” being shy- but also there are so much we do not know about autism that to consider
1-that all biomed parents are similar
2-that we can not find a place of understanding
is doing at disservice, at least to my son.
You are assigning to me ideas that I do not have. What I am proposing is that the phylosophy of the approach I am doing is totally different from what you are presenting as paradigmatic.I have not problem with my son being shy or having stereotypes because they give him confort; what I have problems is what the medical conditions that - because of their nature- were affecting severely his development ( gastrointestinal, immunological, toxicological , nutritional/metabolic and neurotransmitter issues-no known genetic problem)whose treatment can ameliorate several of the most severe problems ( in terms of language, hyperactivity, behavior problems) that many times are present and assigned to “autism”.
For me, not all is different brain structure prenatally and genetically conditionated.
And yes, I have read with interest and attention the information that Amanda many times has provided about her experiences and her health. I appreciate very much her honesty on these aspects.
Respect and consideration of the human beings we all are can be present always, even if we think different- even strongly different-, autistics or not. For me, to hear and to learn from autistic adults has been extremely important. it has opened my mind and my heart to their experience and it has been enormoulsy important to understand better my son. BUT my autistic son also has other needs I must consider with care, with research and with science related to his health.
If you are interested you can read my blog or to continue this exchange of ideas by e-mail.
Kristina Chew, PhD
Apr 29, 2007 at 1:18 pm
Thanks María–you’re warm-heartedness and compassion always say so much.
Kristina Chew, PhD
Apr 29, 2007 at 1:53 pm
Harold, I’m interested in how you note that ABA is “both a health and an education intervention”—-in my conversations with our Lovaas ABA consultant, we have tended to emphasize the educational side. Certainly teaching Charlie to brush his teeth, shower independently, take medicine and so forth have helped his overall health. As I’ve noted before, we have indeed used some biomedical treatments for Charlie and are currently both keeping him on a gluten-free casein-free diet, and also experimenting with the occasional bit of bread. I’ve been reading the new book by DAN doctor Kenneth Bock and while he notes the need, of course, for education in helping an autistic child, his represention of ABA is not as my consultant and I see it, or as our therapists practice it (when Charlie is having trouble on something, the first thing the consultant says is, is he motivated to learn? how can we reconfigure things to meet Charlie’s learning style? is he having fun?—this is the particular response of our current consultant; others have not always had her positive, “Charlie-directed” attitude). I think you’ve noted that you have not tried biomedical treatments for your son, or have you?—-I may be incorrect on this and my apologies for not remembering. Many regards.
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