Thoughts on Autism Research
There’s been some (heated) (impassioned) discussion in the autism community of late (go here for one exchange) about research that focuses on possible environmental factors connected to autism “versus” research that focuses on genetics (and perhaps the publicity surrounding the vaccine court hearings has contributed to this). Now that Autism Speaks has announced (on June 29th) that it will fund 52 projects in autism research, for a total of $15.2 million, these exchanges will surely continue. Descriptions of the projects can be found here. Ten of the grants are specifically devoted to treatment students. Regarding the rest, Autism Speaks notes:
Along with the ten grants devoted to treatment studies, there are: 11 grants pertaining to determining the etiology, or causes, of autism — i.e., studies of genetic factors, environmental factors and epidemiology; 26 grants pertaining to gaining an understanding of the underlying pathobiology of autism — i.e., studies utilizing cell biology, molecular genetics, immunology, brain imaging, and basic neuroscience, including post mortem brain studies and animal models of autism features; and 6 grants pertaining to methods of better diagnosis of autism or associated dysfunction.
I think it useful to recall what Professor Matthew Belmonte of Cornell University wrote in a recent letter to the New York Times. Belmonte emphasizes that we need not see research on genetics and research on the environment as in opposition to each other:
“[G]enes can affect responses to the environment, and the environment can influence gene expression, making the genetic-environmental dichotomy a false one.”
Autism research, he noted, can be open to consider “multiple interacting causes.” Too, the 10th edition of Gene Genie on Genomicron notes that “the very definition of ‘gene’ is open to revision” and provides links to a number of blogs (including, I am grateful to note, this blog on Fragile X and mice.) And on the subject of “false dichotomies,” Genomicron notes that “nature versus nurture,” just like genetics and the environment, is a “false [dichotomy].”
Autism Speaks notes that it is hoped that findings from these research projects might find ways by which autism might be “more effectively treated and prevented”; one study will consider the effectiveness of melatonin and sleep problems in children. We have given Charlie melatonin for several months now and his sleep habits have become regular (with the occasional 3am wake-up). I prefer not to talk about “preventing autism” but rather about providing my son and autistic children and persons, and their families, with education, services, and understanding. I hope that Autism Speaks can start to think of ways to allocate funds to help families with things like daycare and after-school care. To offer a personal example, there are three people on this planet besides Jim and me who can take care of Charlie full-time (my parents who live in California and Charlie’s long-time babysitter/speech therapist); just finding someone reliable to meet him at the bus and stay with him for an hour or so would make my home commute less harried: How many parents of autistic children do not work because of not being able to find someone to watch their child?
I am not a researcher, but perhaps this would be a topic to pursue.
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POSTED IN: Autism Organizations, Cause, Environment, Fragile X, Genetics, Health, Science
80 opinions for Thoughts on Autism Research
passionlessDrone
Jul 2, 2007 at 12:03 pm
Hi Kristina -
“I hope that Autism Speaks can start to think of ways to allocate funds to help families with things like daycare and after-school care. To offer a personal example, there are three people on this planet besides Jim and me who can take care of Charlie full-time (my parents who live in California and Charlie’s long-time babysitter/speech therapist); just finding someone reliable to meet him at the bus and stay with him for an hour or so would make my home commute less harried:”
It can be very difficult when there is simply no one that can be relied on to watch your child. We have yet to find a solution other than what you have listed, direct relatives and well known therapists.
Surely, however, some type of solution that does not involve external funding has been found by the parents of the millions of thirty, forty, and fifty year old autistics out there. This blog appears to have a wide audience, maybe some of them can provide some insight on this problem?
-pD
George Wade
Jul 2, 2007 at 12:21 pm
This is an excellent start by Autism Speaks: just raising the cash is a great effort. Putting it to useful research is one more.
As some of the studies bear fruit it would then be even more useful to investigate synergies of several therapies applied to individual autistic children.
There are methodologies for studying genomics; where the animal being studied will not function unless all, or very nearly all of the genes are present. A methodology for studying holistic treatment needs to be developed.
Perhaps starting with all the macro and micro nutrients in optimal amounts and then adding several detoxification routines, one at a time, would be a good start. This is not to invite critical put downs: it is to invite experimental designs that make real progress for real people.
Once that progress begins — ABA and sensory training can be added to the synergystic mix.
The condition we call autism shamelessly exploits negative synergies opportunistically. We have to design our positive synergies to fight back.
Niksmom
Jul 2, 2007 at 12:52 pm
“How many parents of autistic children do not work because of not being able to find someone to watch their child?”
Well, I can think of one right here. Granted, for so long Nik’s medical needs were complex and, frankly, scary to anyone not trained as a medical professional. Even now, though, we are not able to find care for Nik. On rare occasions, my elderly parents (one of whom is very hard of hearing) will come after we’ve put Nik to bed and give us an opportunity to go out for a movie or cup of coffee. But even that is rare.
pD, I think you are right that there is a generation of families who made-do without anything which required outside funding. However, I also think that the very nature of family and community has changed so much —even since my own childhood (I am 43) —that there is no longer the sense of “shared experience” in raising our children (special needs or none). People often do not live close to extended family, do not always know their neighbors and often do not know where to turn for help.
Even the programs with funding aren’t really much of an answer for those whose children might not fall at an extreme end of the spectrum which requires more involved or significant care. Though I am unable to work b.c of my son’s needs, we are not eligible for respite care **because I don’t work!**
I, for one, would be ever so grateful if AS would put some money toward finding solutions for those of us living the day to day realities. Don’t find the prevention or the cure. Find me the help I need.
MomtoJBG
Jul 2, 2007 at 2:15 pm
Hear, hear!
Leila
Jul 2, 2007 at 2:35 pm
In my area, there is financial help available to parents who have to take care of special needs kids 24/7, but only after the child turns 5 and still has very little self-help/adaptive skills. I think they also have a limit depending on family income. The application process from what I know is very cumbersome and bureaucratic, and you can imagine the waiting list. I don’t qualify yet because my child is under 5.
Leila
Jul 2, 2007 at 2:44 pm
One more thing regarding childcare for autistic kids - they don’t always understand that the parents will only be out temporarily. The few times my husband and I went out on a date and left our son under the care of relatives (whom he really likes and knows well), he still got really distressed. He doesn’t mind when I drop him off at preschool (where he goes part-time every week) because it’s a routine for him. But if I’m at a friend’s house and step away to use the restroom, or even at the OT clinic and do the same thing, he starts crying and calling “Mommy, Mommy”. So my point is, even when your child doesn’t have many challenging behaviors, it can be very hard to arrange a daycare situation.
George Wade
Jul 2, 2007 at 3:06 pm
What would be a good ratio of direct assistance to autistic families compared to research $$’s?
Perhaps 10 : 1 ?
We do not want so many disabled children in the next generation that there is not enough cash to care for anybody properly. That research is going to have to be well planned to cover as many kinds of disability as possible.
Joseph
Jul 2, 2007 at 3:40 pm
I think Neurotypicals should be researched. A promising area of research might be determining why neurotypicals pathologize those who are different to themselves and why they spend so much effort trying (very unsuccessfully) to explain those differences in medical terms.
Daisy
Jul 2, 2007 at 3:53 pm
We no longer qualify for respite care because Amigo is not “disabled enough”. That means that I rush home from work to meet his school bus each day. If I have a meeting, Grandma helps out or Dad takes a vacation day. A vacation day! Because the teenager is not “disabled enough” by one criteria.
George Wade
Jul 2, 2007 at 3:59 pm
Yes Joseph,
Neurotypicals seem vindictive when they disqualify Amigo from respite care for “Not being disabled enough.” He needs care, but does not need to be negatively labelled.
NT research should get 1% of the budget.
Melanie, Bobby's mom
Jul 2, 2007 at 4:27 pm
Re: babysitting issues
Yes, I can see how it could get quite hard to find a sitter once Bobby gets bigger, especially if potty-training stays s-l-o-w. My parents keep Bobby if we go away for a few days. Otherwise, we’re fortunate to have local high-school and college students from our church who know Bobby well enough that they can keep him for 4 or 5 hours. One of our preferred sitters has a mom who is an OT, so she doesn’t scare easily. Maybe local colleges with OT/Education programs might be a good source for sitters for those who live near universities? The problem then becomes paying enough to keep a sitter, and that problem alone keeps us from going out too often…
mcewen
Jul 2, 2007 at 4:58 pm
Your mission, should you care to take it! is to summarize blogs and news items for the last 20 days!
I’ve been reading [catching up] here and there but I fear I’ll be sticking my size 10’s in until I’m a bit more up with the hunt.
Meanwhile, summer holidays mean that we seem to be busier than ever. [Can that be my excuse until they go back to school in the Fall?
cheers
Kristina Chew, PhD
Jul 2, 2007 at 5:28 pm
Leila, that’s why I think daycare/babysitting staff with training in taking care of autistic kids is so necessary—transitions are the hardest. My parents are visiting and this is great, but their visits, our not being around as much, their departures, and much more creates incredible anxiety in Charlie—all good things to work on, but some things have been extra-challenging in the past. We’ll see how this visit goes…..
George, I’m not sure what a “ratio” should be; will have to think about that.
Joseph, Don’t know if research money should be “wasted” on researching NTs—-isn’t there already too much about us…..
mcewen, welcome back! not a bad assignment you’ve given me….let me think…….
Niksmom, I do think societal changes have made childcare a whole new ballpark—–because of our jobs, we lived far away from all of our families (we were in the Midwest) when Charlie was born. Moving back to NJ was primarily really for the schools and services, as my in-laws are too elderly—-they have never been able to babysit Charlie (and I’m writing this on a day, too, when there’s been some “sandwich generation” stress for Jim and me). I just really need someone to meet that schoolbus—-he can’t attend the afterschool programs that other kids in the town can go to. Or if he could, I’d need to get an aide and train them and deal with the buses, the program, etc., etc.—-maybe that would be worth it, but it’s another project in itself!
I’ve only been able to work because of the nature of Jim’s and my jobs, teaching at the college/university level. I can set up my own schedule but there’s always “work at home.”
passionlessDrone
Jul 2, 2007 at 6:36 pm
“I think Neurotypicals should be researched.”
*Yawn*
” A promising area of research might be determining why neurotypicals pathologize those who are different to themselves and why they spend so much effort trying (very unsuccessfully) to explain those differences in medical terms.”"
Not being able to live independently is much, MUCH different than simple quirkiness. Parents are facing very real decisions as to what will become of their children who will not be able to live indepedently when they are gone. If you were faced with this dilema, I doubt you would find sarcasm in it.
What could be more useless than someone who can take care of themselves speaking for their children that cannot?
-pD
Gavin's Mom
Jul 3, 2007 at 12:03 am
Regarding the “Genetic” research — really don’t need much guessing there.
My 100 year old (soon to be 101) grandmother received chelation when she was in her 40’s in Southern Calif. back in the day doctors did it out of private or home clinics and would have lost their medical licenses for doing it!!!! My mother, well, she had polio and rubella, and is very smart but has no friends!! She’s quite content to be a “loner”. My sister would have been diagnosed “Aspie” — speaking full sentences at a very young age, and was treated on Ritalin for some time. Me, well, some add/adhd a little OCD, and some social uncomfort at times . All 3 of us with some diagnosed autoimmune problems. My two older daughters (14 & 21) — some speech difficulties and dyslexia early on. My son (10) on the other hand, well was thought early to have only speech delay, unspecified developmental delay, then ADHD, OCD, ODD, added with Sensory Integration Processing Disorder, until we got the Autism classification at school through a neuropsychologist.
Everyone on my grandmother’s side in our family, from my 100 yr. old grandma to my 10 yo son has food allergies/sensitivities.
So, go figure. I wonder which gene it is, or how it’s morphed …. We’ve got a 90 year span of it!!!!
good luck on the respite issue. The students may be the most popular idea. Some churches have a special needs church and may do a “mom’s day out”. Day care is a problem for us, and likewise, rushing home to meet the bus is a daily endeavor during the school year!! Glad I am not alone however!!
Best of luck…….
AJ
Jul 3, 2007 at 12:43 am
Once again, Kristina, you have said exactly what was on my mind.
Frankly, I don’t give a flip what “caused” my kids’ autism. We didn’t know about JP’s Asperger’s until he was in kindergarten , and he’s now going into seventh grade. We had MORE of a clue when Eleanor was not talking at 18 months. Having had a really rewarding career for 20+ years before we got JP’s diagnosis, I didn’t want to quit working, but his needs came first. Obviously, with two ASD kids, plus a teenager to boot, being an at-home mom is what my new career needs to be. That, and taxi-driver.
And I am right on your trail in terms of services….there are none! I’m not going to get into the stories of how our diagnoses came about, but, needless to say, we are in the same boat: there is a shortage of therapists, there is a complete lack of help. We do not leave our kids with the neighborhood teens, we get no response from the college education majors (though we have posted our flyers), the sitters we have had have stayed once and then don’t answer their phones.
I can’t remember the last time we went to a restaurant (either as a family or a couple).
Of course, living in Texas at the moment, we’d need a boat to get to one….or webbed feet….(hee!)….
George Wade
Jul 3, 2007 at 2:15 am
It is not just consumer goods and software that some parts of Asia are going ahead in: Dr Usha Naik describes her perceptions of autism and treatment changing as the epidemic came to India. anon.autismri.com.edgesuite.net/anon.autismri/Videos/UshaNaikInterview-LowBand.wmv
Noteworthy is the use of critical logic in the role of caution but NOT too much in the role of exclusion of possibilities for treatment. The eventual result is the early referral of very young children to treatments that she talks about at her own hospital. The multiple treatments work well; it may be the synergy that we expect from Indian philosophy?
George Wade
Jul 3, 2007 at 2:22 am
If that long URL causes trouble, go to: about half way down the page…
Interviews with:
Psychiatrist from India interviewed by Dr. Rimland
I could only download ‘Video Lo.’ The ‘Video Hi’ was not to be found this evening.
George Wade
Jul 3, 2007 at 2:23 am
http://www.autism.com/danwebcast/index.htm
Aahhh !
Kristina Chew, PhD
Jul 3, 2007 at 9:15 am
I know that daycare and childcare are often difficult for any family with younger children to manage—even to “leave” Charlie with a neighbor for a few minutes has required training and explanations. It’s quite a dance and we’ve managed. Work is important to me and I’ve often wondered how many parents, mothers especially, might have wished (and needed) to work, but the childcare issue came into play.
I’ve also thought that more resources devoted to creating really good educational options for autistic children—-older ones too, 5 or 6 and up—-would be good. After preschool, figuring out the right school situation was quite an adventure and the options for an older child—-an older child who might not be able to be mainstreaed.
George, thanks for the link!
Mary
Jul 3, 2007 at 11:46 am
I run a non-profit organization in So Cal. One of the projects we are undertaking this fall is to do a childcare provider certification program. We will work with area high schools to identify students who are interested in working with children with special needs and then provide 8 hours of training, plus first aid and CPR. Then, we can provide parents in the area with a list of qualified, certified young adults in the area who can watch their children. I am not the parent of an autistic child, I am an educator and my nephew is autistic. I have been so horrified by the lack of services and beauracracy surroudning autism that we started a non-profit to start helping families. We hope to open a holistic center for autsim recovery (including a school) in fall 2010.
Gavin's Mom
Jul 3, 2007 at 12:05 pm
Same song, second verse here. totally agree on the day care/child care issues, career on hold or wayside for the benefit of putting the children’s needs first and no support. Definitely a need for services in this area.
For my 10 year old, I am struggling with education options. There is no one place that meets all his needs or is readily accessible to us. I am currently driving 50 miles each way for his summer school placement, intended to remediate his reading and math due to TEA issued lack of FAPE at his district.
AJ, what part of Texas are you in? Would love to get in touch!!!
I am in the process of trying to develop awareness in my community outside of Ft. Worth, and eventual comprehensive services so families will have access to support, education and advocacy for their Neurodevelopmentally challenged kiddo’s. Am also trying to organize a general parent’s support group.
AJ, is there a way we can connect without “posting” the info?
Gavin's Mom
Jul 3, 2007 at 12:16 pm
Mary, sounds like the same vision I have here…. That’s awesome, what you are ***doing*** (not just talking) to make a difference. Do you have a way to share info? Maybe we could follow your lead here…..
BTW, I grew up in Riverside/Redlands. Are you close there?
Mary
Jul 3, 2007 at 3:16 pm
Yes. You can go to our website at http://www.nvlearning.com. You are also welcome to email me anytime at mary@nvlearning.com. I am very eager to connect with people around the country. I am in the Temecula/Murrieta valley. That is only 30 miles south of Riverside!
I am working on the website right now, so it should be updated in the next few days. Continue to check back as our work begins to take shape. We just became a 501 3 c in May, so we are brand new in the endeavor!
Keep fighting the good fight…your kids are worth it!!
Kristina Chew, PhD
Jul 3, 2007 at 3:19 pm
Mary, thanks for sharing your website. Some of my son’s former therapists once told me that they thought it would be great to open a daycare for special needs children someday–best wishes on the new endeavor!
Brains and Genes, Vaccine Court, Mercury, Myths, Fights (or Feuds), A Good Book: What I Did in June
Jul 3, 2007 at 6:43 pm
[…] await many a blogpost about the adventures that did ensue. In the meantime, she has given me an assignment—nay, a “mission”—-”to summarize blogs and news items for the last 20 […]
Mary
Jul 4, 2007 at 2:23 am
I think I was misunderstood. Although we are going to certify babysitters, what we are opening is an autism school and treatment center, not a daycare facility. Although a great idea, not my area of expertise. I’ll bring it up to my board of directors, though…maybe that could be next on our list!
Kristina Chew, PhD
Jul 4, 2007 at 10:17 am
What will be your teaching methodology? There’s a number of private autism schools here in New Jersey and am always curious to learn about others.
Mary
Jul 4, 2007 at 1:23 pm
That’s a broad question. I have always worked with kids who were far below grade level and/or were learning disabled and my philosophy is this…meet the child where they are in a highly structured, extremely small learning environment (sometimes one-on-one if so needed) and continually work toward a typical peer standard of achievement. In other words, every child should make the best progress that child can make, and it is the school’s job to constantly analzye if the progress is enough and if we are using the appropriate strategies.
If you are asking…will it be small group, one-on-one, inquiry method, direct instruction, etc….that really depends on each individual child. We firmly believe that education should be individualized and “created” to meet the needs of each individual child.
In a couple of weeks I am going to visit some other autism schools in Northern CA that have been very successful and see what they’re doing.
Did that answer your question?
Kristina Chew, PhD
Jul 4, 2007 at 1:31 pm
Thanks, Mary—-I’m originally from Northern Cal and have always been interested in seeing the different options such as the S.T.A.R.S. school. (Not that I know about many of the schools; that is just one I have heard of.)
Mary
Jul 4, 2007 at 1:56 pm
Are there any programs you have seen that you are particularly impressed with? I am willing to travel across the country to see a good one. We aren’t opening until Fall 2010, so we have some time.
Gavin's Mom
Jul 4, 2007 at 4:11 pm
Mary and Dr. Chew,
My aunt is retired from the ISD in Sebastopol (napa valley area) and currently independently contracts to conduct psych assessments for educational needs and placement. She recently attended a training on SCERTS, which is a good program for building social awareness and social skills. Any program that strives to educate ASD children might also do well to consider that these children often, regardless of level of function, will need to develop skills in the area of perspective taking — an area my son has difficulties.
In addition, considering Executive functioning, even the brightest student is likely to struggle with basic organization, planning and task completion.
In case your not already aware, Future Horizons, Inc., based in Arlington, Tx., is not only a great resource for books re: AU/Asp., but also publishes a magazine: http://www.FHautism.com and http://www.autismdigest.com. Recent article reviews “homework and beyond” which compiles 10 steps to foster organization skills written by Michelle Garcia Winner http://www.socialthinking.com. http://www.creativetherapystore.com is another good link for resources in the area of education/skill building tools. Lastly, http://www.autisminspiration.com, offers awesome and practical information and printables for groups, social stories, pecs, parent education, home and classroom programs, all kinds of “useful” information related to ASD classrooms and home.
One other thing, it’s my opinion a program should have a strong parent training component. As a LMSW/CCM (master social worker/certified case manager), and parent having had to “navigate” all the different aspects of a child on the spectrum, I know first hand that having a “Case Manager” to help break up all the parts of a plan and provide direction with priorities, etc, would have saved me and our family a great deal of stress and time trying to figure out and juggle everything. Even as a SW and experienced in working with children and families in NeuroPsych treatment, there were times I was screaming inside that I needed a SW or casemanager to help me!!!
Most programs focus on one area or the other. Personally, what make life so “difficult” is having to go to so many different places to meet all the varied needs. Education, Advocacy, therapy, bio treatments, speech, OT, financial and life care planning, Auditory and Vision therapy, insurance issues, parent training/workshops, etc., etc.,. Wouldn’t it be awesome to have a “one stop shop” or at least a CaseManager that helps keep all the “pieces” of the puzzle together and moving in a positive direction? It’s almost a set up to try to be the parent and case manager at the same time. Just a thought - as narrow to my own situation as it may seem.
At any rate, I would have been lost without my aunt helping me along the way concerning advocating for my son’s educational needs. She is very skilled and knowledgeable in this area, and is a strong advocate in the field. Let me know if you’d like to connect with her when you visit N. Calif. I think she’d be very interested in your organization’s plan, and may have some schools/programs she’s aware of that you could visit as well.
BTW, the Yale Child Study center has a program that may be worth taking a look at as well, from what I hear. Seattle, and Oregon seem to have strong programs in place for ASD also.
I am excited about the progress in this area. I will keep a bookmark for your web page. Please keep me informed. My apologies for my “soapbox”.
Thanks.
Kristina Chew, PhD
Jul 4, 2007 at 4:33 pm
I’d recommend some schools in New Jersey to look at……. a lot of efforts are being made here to create programs in public school districts. New Jersey’s largest autism organization, COSAC, has a list of schools here.
Thanks for all those references, Mary!
anon_please
Jul 4, 2007 at 5:28 pm
“We hope to open a holistic center for autsim [sic] recovery (including a school) in fall 2010.”
It’s troubling, to me, that a center promoting some “recovery” treatment is being combined with a school. We are in need of a progressive and creative kind of school for our child. His current school has over-focused on “cure”. Every year they have had the kids make banners for the CAN Walk and there’s always much talk of curing/chelation. My child has been upset by this pathologizing. So, we are in search of a new school in So Cal. It’s too bad yet another school is on the path to make this same mistake and perpetuate the idea that the kids are in need of some kind of systemic ‘recovery’. The kids feel this bigotry — every day.
Mary
Jul 4, 2007 at 5:30 pm
Wow! what great information! I would be eternally grateful to have the chance to meet your aunt. You can email me directly at mary@nvlearning.com. I can give you the website with our phone # so we could talk on the phone as well.
You will be pleased to know, I think, that one of the main reasons our board of directors decided to pursue an autism center is that we realize that parents have to do “strip mall shopping” as we call it for services. So we intend on being the first holistic center in the county-all services, including biomed, family training, support group, OT, nutrition, neurological training, etc. all in one location in a fully integrated treatment plan overseen by a case manager.!!
I will look at the information you posted. I am hungry for information and we want to make sure we set the center up correctly and avoid as many pitfalls as possible. :-)
Mary
Jul 4, 2007 at 7:31 pm
Well, let me clarify, then. By recovery, I mean-helping every child meet their fullest potential. I am not a bigot but a child advocate whose family has been touched deeply by autism. I believe autism is a very complex disorder and every kid is very different. We are not looking for a cure for every child…just a place to help kids be their best and be loved in the process.
I’m sorry you’ve had a bad experience. I’m sure that our center will not be for everyone. I hope that we can help some. My goal as an educator and school administrator was to help as many kids as possible and knowing that we can’t help all of them all of the time.
I hope you find a place that fits you and your needs.
Kristina Chew, PhD
Jul 4, 2007 at 8:38 pm
Mary, the notion of “recovery from autism” is a bit controversial, I think, but a good education focusing on a child’s strengths to cultivate their weaknesses is what is needed. Am looking forward to knowing more about your school.
anon_please
Jul 5, 2007 at 2:30 am
“I am not a bigot but a child advocate whose family has been touched deeply by autism”
I never said you were a bigot. I said the children feel the bigotry due to their not being accepted simply because of a different kind of neurological make-up.
“I’m sorry you’ve had a bad experience”
It was not a bad experience, it was just a typical experience. I’m not interested in typical; I’m interested in expansive.
“I hope you find a place that fits you and your needs”
Thank you very much. Truly.
David N. Andrews M. Ed. (Distinction)
Jul 5, 2007 at 2:39 pm
“… why neurotypicals pathologize those who are different to themselves and why they spend so much effort trying (very unsuccessfully) to explain those differences in medical terms.”
This is one for the sociologists, social psychologists and social anthropologists, I think.
Useful, though. Very useful.
Kristina Chew, PhD
Jul 5, 2007 at 4:00 pm
It can be kept on file……
Gavin's Mom
Jul 5, 2007 at 4:20 pm
Would just like to mention, regarding semantics as “recovery” and “cure”, again, we are often talking about children who suffer because they are not able to communicate effectively, assess or process stimuli properly, express their emotions in a safe way for themselves or others, or who cry everyday over senseless situations and mild changes in their routines. My son was not happy or “simply a different kind of neurological make up” when he was unable to participate in sports or classrooms with his peer group. He knew enough to know he was different and it wasn’t a good kind of different. Being driven to tantrum, eat dirt, perseverate, or an inability to join in conversations or enjoy social play, write thoughts or feelings, comprehend reasoning, unable to sleep, unable to stop grinding teeth or bite themselves, go to grocery stores or amusement parks without screaming from the overstimulation….shall I go on?
These are not uniquely lovely characteristics and from which now my son has “recovered” and is able to be who he really is. He loves to laugh at jokes, play with his friends, read, play basketball (without melting down every time he misses the basket), learn about saving money and going to Gamestop for a favorite video game he has earned, going to amusement parks and riding roller coasters; he loves being who he is now — not that we loved him any different, but we knew he was suffering. He wasn’t able to just be a kid or enjoy doing the things kids do.
The DAN protocol, along with varied therapies, controversial or not, has saved my son and improved our family experience.
Forgive me, but being “Neuro diversified”, is not the same as brain inflammation, physical pain, metabolically imbalanced, nutritionally deficient, or “brain starved”.
There is plenty of research and information in this area to review. This is not new info, but just in case: http://www.autism-society.org, http://www.mindinstitute.org; http://www.autismistreatable.com; http://www.feingold.org. A thorough review of Martha Hubert, MD or Rimland/ Stephen Edleson’s research and papers is quite compelling. There are forms available for parents to rate progress or changes in certain “atypical” behaviors in relation to certain treatments/therapies/interventions.
Try this one, http://www.afnic.org. Association for Neurologically impaired children. although it uses the word “impaired”, they really fight to teach parents and teachers about how the brain is wired and accepting and working with the strengths. They use the word “building skills” rather than “recovery”. Personally, I believe the two go hand and hand and further, to achieve true “neurodiversity” it requires removing or “treating” the insults which “interfere” with some (many) children from achieving even that level of functioning. My son still learns differently, as he is quite concrete among other things, but at least now he can be reached and he is able to process using higher cognitive structures and accept instruction, and benefits from social interaction. At least now, he is capable to benefit from “progressive and creative” teaching strategies.
At any rate, “diversity” is what it is, as evidenced here. Sometimes it’s just nice to agree, to disagree. I do agree, that in our society we often feel the “pendulum swing” from one extreme to the other. I also agree there is a need for greater creativity and progressive environments in education.
Best of luck, Anon_please. You know your child’s needs best and sound like someone who will continue to look for the right match for your child. Please, share what you find when you find it!! Sincerely.
anon_please
Jul 5, 2007 at 5:42 pm
Thanks Gavin’s mom. I go very, very far back in what is now called “biomed”, long before (for example) Herbert was every even slightly interested. I have years of experience in that realm … and I’ll just leave it at that for now.
Neuroinflammation is a very complex issue and we do not quite have enough information yet (as is clearly stated on Pardo’s lab site) to determine if it’s something negative or whether it’s actually something positive (reparative).
As the kids get older such words as: cure; recovery; toxicity; poisoning can have a heavy impact on how they affect a child’s sense of self. This has been an over-riding concern of mine of late because of significant first-hand experience in this regard.
Thanks for your kind words.
George Wade
Jul 6, 2007 at 1:24 am
Could you explain: “I go very, very far back in what is now called “biomed”, long before (for example) Herbert was every even slightly interested. I have years of experience in that realm …” In language that an aspie from another country could understand? I don’t quite get the American idiom here and want to ask fairly.
I can’t tell if it is an expression of solidarity, a put down, or what?
You see Dr Herbert is a brave woman who knows very well that “Neuroinflammation is a very complex issue and we do not quite have enough information yet” (as is clearly stated on Pardo’s lab site) to determine if it’s something negative or whether it’s actually something positive (reparative). She does not think that is an excuse for doing nothing at all about it and says so.
She tells the establishment that it is time to “Get a grip on this epidemic.” It is not just autism, is it?
By chance I bumped into an aquaintance who does video games. He’s doing a new one on ecology called “Gang Green.” The gang enforcing ecology… Our kids will understand it and themselves at once.
Kristina Chew, PhD
Jul 6, 2007 at 1:27 am
I don’t think we can definitely say that there is an epidemic of autism, however much it might seem and feel like it.
Mary
Jul 6, 2007 at 1:32 am
Even in New jersey where the diagnosis rate is one in 73? That feels very epidemic-ish.
Kristina Chew, PhD
Jul 6, 2007 at 1:43 am
It’s 1 in 94; in talking about whether or not there is an “epidemic,” the changing definition of autism has to be taken into account:
Why there’s no autism epidemic (Slate, Jan. 2007)
What autism epidemic? (Time magazine, Jan. 2007)
changes in the DSM
George Wade
Jul 6, 2007 at 2:28 am
Arguing is not doing something…
George Wade
Jul 6, 2007 at 2:30 am
(u) Borrowed from Skype.
George Wade
Jul 6, 2007 at 2:37 am
Does the CDC admit to one in ten or to every other child being subject to disability of some kind?
Should we argue about the tune we play while Rome burns? 8) Even if it is not an epidemic of any kind I’m moving, mostly, to blogs where action results.
Hope you can get the Skype emoticons decoded.
passionlessDrone
Jul 6, 2007 at 7:47 am
Hi Gavins Mom -
“These are not uniquely lovely characteristics and from which now my son has “recovered” and . . . . ”
Exactly, exactly, exactly!
Very nice post.
- pD
passionlessDrone
Jul 6, 2007 at 7:55 am
Hi anon_please -
“Neuroinflammation is a very complex issue and we do not quite have enough information yet (as is clearly stated on Pardo’s lab site) to determine if it’s something negative or whether it’s actually something positive (reparative). ”
You might be interested in knowing that the Pardo group has performed a new expirement creating the same microglial activation in rats using a beta2-adrenoceptor post natally. The specific agent in use, Terbutaline, has been shown to increase the rate at which identical twins have autism when used on mothers to prevent premature birthing.
Even more interesting, the effect was only seen within a specific window of post natal exposure, after 11 days out of the womb, it had no impact, before hand, especially before post natal day 6, the same inflammation was seen. Go figure.
This would tend to cast considerable doubt on the notion that the inflammation is protective in any sense.
Link
- pD
Irene
Jul 6, 2007 at 9:14 am
Lots of comments…no time to read but count me. I’m a parent who is now working but struggled to find care for our autistic son. Now, with the move in just two to three weeks it is again an issue. I must work, financially it is necessary but I am limited to part-time (during school hours) or late nights (when husband is home) until we can find trustworthy care, IF we find it.
Chuck
Jul 6, 2007 at 9:20 am
Sure we can scientifically determine if there is an epidemic. Subtract out all PDDNOS, Aspergers and all other diagnosis that would not meet DSM-III criteria from the population headcount and see if they exceed the 1:10,000 that was globally stated during the time prior to DSM-IV. Any professional psychologist child seeing a ASD child should be able to simply check a box that says “Meets DSM-III criteria” and be done with this criteria change issue.
notmercury
Jul 6, 2007 at 1:42 pm
pD: “This would tend to cast considerable doubt on the notion that the inflammation is protective in any sense.”
If by inflammation you are refering to microglial activation, it is both protective and essential to neural development/function.
passionlessDrone
Jul 6, 2007 at 2:03 pm
Hi notmercury -
“If by inflammation you are referring to microglial activation, it is both protective and essential to neural development/function.”
Curious statement in the context of this conversation.
In the Terbutaline study I mentioned, none of the rats developed the microglial activation if the agent in question was administered past post natal day 5. Given that, why should we assume that the activation is protective or essential? Would you suggest that the rats that did not develop microglial activation are at a disadvantage in either neuronal protection or essentials compared to the rats that did?
Also considering that the original Pardo study showed that controls did not show microglial activation (or at least, significantly reduced rates of it), would you suggest that people without autism are somehow at risk of not getting enough microglial activation? Maybe we should start mandatory terbutaline injections for infants, just be to be sure everyone is getting adequate microglial activation. (?)
The authors say:
“Our findings indicate that beta2-adrenoceptor overstimulation during an early critical period results in microglial activation associated with innate neuroinflammatory pathways and behavioral abnormalities, similar to those described in autism.”
Where is the spin that this can be taken as anything but poor news?
Take care
-pD
notmercury
Jul 6, 2007 at 2:30 pm
Spin? I was merely disagreeing with your statement that inflammation is not protective in any sense. Clearly it can be and much depends on level and context.
You are free to draw any conclusions you would like from Pardo et al. but you may want to consider the authors’ own caveat: “At present, whether neuroglial activation is destructive, reparative, or reflects a retained fetal pattern, is unknown. It is also unclear whether neuroinflammation in autism correlates with behaviors seen in
this disorder.”
Note the mention of a retained fetal pattern. Microglial activation is a normal part of early neurodevelopment. I am perfectly willing to acknowledge that neuroinflammation might contribute to or even cause autism but I’d first like to see replication beyond a single study where the results and conclusions are far from ironclad.
passionlessDrone
Jul 6, 2007 at 2:52 pm
Hi not mercury -
“I was merely disagreeing with your statement that inflammation is not protective in any sense. Clearly it can be and much depends on level and context. ”
My statement was that this type and amount of inflammation is not protective in any sense. If someone were having a discussion about people with 105 degree fevers, inserting the fact that fevers can be protective, while technically true, adds little to the conversation.
“Note the mention of a retained fetal pattern. Microglial activation is a normal part of early neurodevelopment”
Ack! If it were normal, why were the only rats that developed the activation those that got dosed during a specific post natal period? If the severity of activation was ‘normal’, shouldn’t we see no difference between rats dosed at pn day 2 and pn day 14, or for that matter, rats that didn’t get dosed at all? The whole point of the study is the there were two very different observations made, thus, one set of observations was outside normal.
The website you quote is considerably older than the terbutaline study, where they say quite clearly:
“Our findings indicate that beta2-adrenoceptor overstimulation during an early critical period results in microglial activation associated with innate neuroinflammatory pathways and behavioral abnormalities, similar to those described in autism. ” [my emphasis]
As far as protective or disruptive, given the fact that the agent in use has been shown to increase autism; I’m truly curious how or why you could possibly speculate a protective mechanism is in effect.
Here is what has been shown:
Have autism? You have more microglial activation. Get more terbutaline ? Get more autism. Get more terbutaline early in development? Get more microglial activation. Don’t have autism? You have less microglial activation. Don’t get terbutaline? Get less autism. Don’t get an terbutaline early in development? Get less microglial activation.
Argument: The activation might be protective.
Argument: The activation might not have anything to do with autism.
I may be depending on logic here, but in this case the logical twists necessary for your argument(s) are far more acrobatic.
Take care
-pD
George Wade
Jul 6, 2007 at 3:13 pm
We won’t get very far arguing so hard: as far as the nearest pub?
Perhaps inflammation is protective short term? More damaging long term?
Why not find ways of reducing long term inflammation and trying them out in practice to see the benefits and difficulties?
notmercury
Jul 6, 2007 at 3:52 pm
“I may be depending on logic here, but in this case the logical twists necessary for your argument(s) are far more acrobatic.”
Perhaps, though your “Have autism?” argument felt like a cephalopod Cirque Du Soleil in a centrifuge. Just a suggestion; Less passion, more Drone.
pD: “The website you quote is considerably older than the terbutaline study, where they say quite clearly”
Actually, my quote was from the terbutaline study though I may have an earlier version in my documents folder.
Another interesting quote from my copy:
“We found a delayed onset between terbutaline administration and the appearance of neuroinflammation, as microglial activation was not apparent on PN 6 but was robust by PN 30. This delay is in keeping with the later emergence of a neurobehavioral disorder that nevertheless originates from an insult during pregnancy.
So, assuming that microglial activation is pathological in autism but also a normal and essential part of early neurodevelopment, that leaves the simple task of deciding how and when to intervene. Try to suppress microglial activation by too much or too soon you risk induction of developmental delays.
I guess what I am trying to say is something similar to anon_please’s statement: “Neuroinflammation is a very complex issue and we do not quite have enough information yet (as is clearly stated on Pardo’s lab site) to determine if it’s something negative or whether it’s actually something positive (reparative). “
By the way, if you read up on microglia and what constitutes “activation” and how that is quantified in post mortem brain tissue, it becomes clear that it isn’t and on/off type of mechanism. Like so many other biological processes there are multiple shades of gray. Fuzzy logic, if you will.
anon_please
Jul 6, 2007 at 10:40 pm
This out today in the WSJ:
Not only is every new brain different from any other, but the variations within each one as it adapts, swells and contracts _confound analysis_.
“A developing brain looks weird,” said pediatric neurologist Katrina Gwinn at the National Institute of Neurological Disorders and Stroke, who directs the NIH project. “Something that might be normal in an adult might look abnormal in a child.”
… more soon …
passionlessDrone
Jul 7, 2007 at 9:43 am
Hi not mercury -
George is right. I owe you a beer.
Anyways,
“We found a delayed onset between terbutaline administration and the appearance of neuroinflammation, as microglial activation was not apparent on PN 6 but was robust by PN 30. This delay is in keeping with the later emergence of a neurobehavioral disorder that nevertheless originates from an insult during pregnancy.”
I’ll admit to being a bit confused. I was under the impression that the agent was administered after birth. (?) From the abstract:
“Newborn rats were given terbutaline (10 mg/kg) daily on postnatal days (PN) 2 to 5 or PN 11 to 14 and examined 24 h after the last dose and at PN 30″ [my emphasis]
I may try to get a complete copy of the paper.
“So, assuming that microglial activation is pathological in autism but also a normal and essential part of early neurodevelopment, that leaves the simple task of deciding how and when to intervene.”
As far as intervention, why not stop administering
beta2-adrenoceptors as a start? They didn’t see any activation in animals that didn’t get dosed.
“Try to suppress microglial activation by too much or too soon you risk induction of developmental delays”
How interesting. Do you have any studies on this you would be willing to share?
“Neuroinflammation is a very complex issue and we do not quite have enough information yet (as is clearly stated on Pardo’s lab site) to determine if it’s something negative or whether it’s actually something positive (reparative). “
I thought about this for a while. I suppose, it is possible that the terbutaline caused an as of yet undetected reaction, which the activation is attempting to rectify. I guess I was arguing against the premise that the levels of activation seen were not indicative of any problems, which was not explicity made.
If the inflammation is protective, it is protecting against something that was initiated via terbutaline administration.
No more blogging for me until Monday!
Take care.
-pD
Kristina Chew, PhD
Jul 7, 2007 at 9:52 am
pD, have a good weekend and good luck sending the virtual beer, not sure of its effect on neural functioning……
Gavin's Mom
Jul 7, 2007 at 8:21 pm
Wow.
Well, regarding the comment many posts ago:
“As the kids get older such words as: cure; recovery; toxicity; poisoning can have a heavy impact on how they affect a child’s sense of self. This has been an over-riding concern of mine of late because of significant first-hand experience in this regard.”
So, what words should be used then to explain prescription medication?
Just curious….
I think as parents, we are all “creative” enough to find the right words our children can understand to explain improving their health and well being.
Kristina Chew, PhD
Jul 7, 2007 at 8:24 pm
Regarding the prescription medications that Charlie takes, they are for “improving …. health and well being”; for helping him to do better in the classroom. Not a cure etc.; yet another tool. Best regards—
Gavin's Mom
Jul 7, 2007 at 8:25 pm
afterthought:
Personally, ALL brains look weird!!!
LOL!!!!!
anon_please
Jul 7, 2007 at 8:33 pm
Bottom-line: Before you (the generic you) tell a child that they are “poisoned” you had better be d*mn certain beyond all doubt and be prepared to stand by that ascertation for the rest of your life.
Gavin's Mom
Jul 7, 2007 at 8:37 pm
Hi Dr. C:
Yeah, that’s my point. Many kids take medication, could be for helping asthma,… some kids have diabetes and need insulin. How is that explained? Don’t we talk about a “cure” for juvenile diabetes and or obesity? Those kids aren’t put out or messed up because of it.
I understand the point that Anon_please is trying to make…. but playing the role of “devil’s advocate”, I am just asking the question:
“whats the difference?” Why is using the words “recovery” or “cure” so bad when it comes to “treating symptoms” in autism?
In the case of diabetes — medication/treatment might stabilize glucose, but the person may always be seen as one with diabetes.
In autism, I think, it’s not the “cure” part that is such the problem, but rather changing the “stigma” about what autism is and how it presents, or what it means to people involved etc.,,
maybe I am just naive….
Kristina Chew, PhD
Jul 7, 2007 at 8:51 pm
I think the use of the “cure” in regard to autism is somewhat misapplied and has roots in a medicalized notion of disability. Certainly a parent wants to address any comorbid medical issues a child may have; the question is, to what extent are various medical issues comorbid with autism, or intrinsic to it?
I guess I would say that my son takes medications not for “autism” but for the effects that some medications have on him as regards anxiety, for instance. But—-and his neurologist emphasizes this—the medications are just to help him be in a better way (so to speak), so that he can be better prepared to pay attention, focus, be educated—–they are far, far from a “cure.” Indeed, we gave him them in the hopes that these might help him.
Always a guessing game, it sometimes seems…..
Julia
Jul 8, 2007 at 4:44 pm
AJ, where do you live? I’m in the Austin area and have a sitter!
Ian Parker
Jul 9, 2007 at 6:16 pm
Just to add my two cents into the neuroinflammation discussion (or more correctly, to wordsmith someone else’s thoughts):
According to Dr Casanova’s minicolumns and autism hypothesis (see here for an overview), the autistic brain has a higher number of minicolumns of narrower than average width, with smaller than average neurons. (Note that this is within the normal distribution of minicolumnar widths - albeit at the tail end - and does not by itself automatically result in autism.) Estimates suggest that each minicolumn is connected to 10^3 similar modules, so therefore a higher number of columns means a higher number of overall connections. Each connection consists of axons and oligodendrocytes necessary to myelinate them.
From Casanova’s “Neuropathological and Genetic Findings in Autism: The Significance of a Putative Minicolumnopathy” Neuroscientist (2006) paper:
“During development, the number of oligodendrocytes is adjusted to ensure even spacing along the length of the axons. This results in the death of oligodendrocytes along regions of cellular crowding (Barres and others 1992). Dying cells provide chemotactic signals for monocytes and their differentiation to form macrophages and microglia (Perry and others 1985; Perry and Gordon 1988). Not surprisingly, microglia activation is prominent in the gray-white matter junction of autistic patients (Vargas and others 2005). It may be the case that the innate immune response observed in the neocortex and adjacent white matter of autistic patients is the result of tissue modeling, a fetal pattern of development that persists to the postnatal years.”
Other alternatives are also discussed, but from the above it should be clear that microglial activation in a brain with a higher number of narrower width minicolumns (again, whether autistic or not) could be beneficial.
Anon
Jul 9, 2007 at 7:20 pm
Just testing…
Ian Parker
Jul 10, 2007 at 12:21 am
Just to add my two cents into the neuroinflammation discussion (or more correctly, to wordsmith someone else’s thoughts):
According to Dr Casanova’s minicolumns and autism hypothesis (see http://a-shade-of-grey.blogspot.com/2006/09/autism-and-minicolumns.html for an overview), the autistic brain has a higher number of minicolumns of narrower than average width, with smaller than average neurons. (Note that this is within of the normal distribution of minicolumnar widths - albeit at the tail end - and does not automatically result in autism.) Estimates suggest that each minicolumn is connected to 10^3 similar modules, so therefore a higher number of columns means a higher number of overall connections. Connections consist of axons and oligodendrocytes necessary to myelinate them.
From Casanova’s “Neuropathological and Genetic Findings in Autism: The Significance of a Putative Minicolumnopathy” Neuroscientist (2006) paper:
“During development, the number of oligodendrocytes is adjusted to ensure even spacing along the length of the axons. This results in the death of oligodendrocytes along regions of cellular crowding (Barres and others 1992). Dying cells provide chemotactic signals for monocytes and their differentiation to form macrophages and microglia (Perry and others 1985; Perry and Gordon 1988). Not surprisingly, microglia activation is prominent in the gray-white matter junction of autistic patients (Vargas and others 2005). It may be the case that the innate immune response observed in the neocortex and adjacent white matter of autistic patients is the result of tissue modeling, a fetal pattern of development that persists to the postnatal years.”
Other oligodendrocyte alternatives are also discussed, but from the above it should be clear that microglial activation in a brain with a higher number of narrower width minicolumns (again, whether autistic or not) could result in microglial activation that in this case would be beneficial.
Ian Parker
Jul 10, 2007 at 12:30 am
Okay, I’m having no luck getting my full comment posted here (tomorrow it will probably show up 20 times), but in the meantime, according to Dr Casanova’s minicolumn hypothesis, autistic brains have a higher number of minicolumns of narrower widths. The result is a higher number of overall connections, which consist of axons and oligodendrocytes to myelinate them.
From Casanova (2006):
“During development, the number of oligodendrocytes is adjusted to ensure even spacing along the length of the axons. This results in the death of oligodendrocytes along regions of cellular crowding (Barres and others 1992). Dying cells provide chemotactic signals for monocytes and their differentiation to form macrophages and microglia (Perry and others 1985; Perry and Gordon 1988). Not surprisingly, microglia activation is prominent in the gray-white matter junction of autistic patients (Vargas and others 2005). It may be the case that the innate immune response observed in the neocortex and adjacent white matter of autistic patients is the result of tissue modeling, a fetal pattern of development that persists to the postnatal years.”
Other oligodendrocyte alternatives are also discussed in the paper, but from the above it should be clear that microglial activation in a brain with a higher number of narrower width minicolumns (again, whether autistic or not) could result in microglial activation that in this case would be beneficial.
Ian Parker
Jul 10, 2007 at 12:53 am
My comment above makes a bit more sense if the following is included:
Just to add my two cents into the neuroinflammation discussion (or more correctly, to wordsmith someone else’s thoughts):
According to Dr Casanova’s minicolumns and autism hypothesis (see here for an overview), the autistic brain has a higher number of minicolumns of narrower than average width, with smaller than average neurons. (Note that this is within the normal distribution of minicolumnar widths - albeit at the tail end - and does not automatically result in autism.) Estimates suggest that each minicolumn is connected to 10^3 similar modules, so therefore a higher number of columns means a higher number of overall connections.
Ian Parker
Jul 10, 2007 at 12:58 am
My comment above makes a bit more sense if the following is included.
Just to add my two cents into the neuroinflammation discussion (or more correctly, to wordsmith someone else’s thoughts):
According to Dr Casanova’s minicolumns and autism hypothesis (see http://a-shade-of-grey.blogspot.com/2006/09/autism-and-minicolumns.html for an overview), the autistic brain has a higher number of minicolumns of narrower than average width, with smaller than average neurons. (Note that this is within the normal distribution of minicolumnar widths - albeit at the tail end - and does not automatically result in autism.) Estimates suggest that each minicolumn is connected to 10^3 similar modules, so therefore a higher number of columns means a higher number of overall connections.
Kristina Chew, PhD
Jul 10, 2007 at 1:00 am
Maybe it’s all those multi-lettered words—-”oligodendrocyte”—-with Greekish roots— I just found your comments (sorry, they got marked as spam—I think because of the URLS). Let the discussion continue—-
Ian Parker
Jul 10, 2007 at 1:09 am
I think ’spam’ is probably an appropriate label for most of my comments ;-)
My comment above would make more sense if I added the following:
Just to add my two cents into the neuroinflammation discussion (or more correctly, to wordsmith someone else’s thoughts):
According to Dr Casanova’s minicolumns and autism hypothesis (see a-shade-of-grey.blogspot.com/2006/09/autism-and-minicolumns.html for an overview (http omitted to get past the spam filter)), the autistic brain has a higher number of minicolumns of narrower than average width, with smaller than average neurons. (Note that this is part of the normal distribution of minicolumnar widths - albeit at the tail end - and does not automatically result in autism.) Estimates suggest that each minicolumn is connected to 10^3 similar modules, so therefore a higher number of columns means a higher number of overall connections.
Ian Parker
Jul 10, 2007 at 1:23 am
Sorry to all for the repetition. I thought my comments had disappeared (and the word perseveration is coming to mind).
I promise I’ll stop now.
Kristina Chew, PhD
Jul 10, 2007 at 1:40 am
Not at all, really! What is blogging but perseveration…..I apologize for not despamming your comments till now!
Julia
Jul 10, 2007 at 7:55 am
I like it when blogs have a little message indicating that the comment is being held for moderation. That way, you know why it hasn’t just appeared as soon as you hit “post”. And if it’s not there the next day, e-mailing the blogger sometimes helps. (How useful that is depends on the blogger in question.)
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