Anyone have an autistic child?

[ChadTower]

It sucks that you had to take them to court but major kudos for doing what you had to do.  Autism programs in public schools are still a long way from being great but they're also way better than they were even 5 years ago.

[Ninten-doh]

Autism programs in public schools are still a long way from being great but they're also way better than they were even 5 years ago.

Agreed.  And for some kids on the spectrum, the program our school disctrict has will be great for them.  Just wasn't right for our son.

[ChadTower]

I think a lot of the milder keeps really need to spend the majority of their time in the typical classrooms anyway.  They need the social development.  It may not go as smoothly as we'd like but the trend I keep seeing now is people taking mildly affected kids and trying to get them placed into the special classes without consideration that being placed with more severely affected kids is actually going to hinder their development more than it helps.  Maybe that's just a function of a lot of parents being lazy and expecting the schools to take care of everything for them, I'm not sure yet.

[CheffoJeffo]

I've rewritten this post a half dozen times, but what I really want to say is "Well Done" -- it's a highly stressful situation that too often is accompanied by a lack of suitable support (as you say, nobody has the definitive answers that we all crave), but every victory builds on the last and changes the course of their lives.

 

[CheffoJeffo]

I think a lot of the milder keeps really need to spend the majority of their time in the typical classrooms anyway.  They need the social development.  It may not go as smoothly as we'd like but the trend I keep seeing now is people taking mildly affected kids and trying to get them placed into the special classes without consideration that being placed with more severely affected kids is actually going to hinder their development more than it helps.

A good point and a tough call -- we've been struggling with this for a while. Initially we fought tooth and nail for inclusion in a normal classroom, because we wanted our daughter to have normal peers to model from. At the same time, however, without significant classroom support (which is unavailable due to a perverse combination of political, funding, legal and even union issues) her academic development wasn't adequate. Now she is in a special ed class and doing better academically. But, she is lacking the in socialization with normal peers.

My son is in a normal class with no academic support and I fear for his academic development (although we are targetting this with intensive ABA for half of each day). His social skills are better than his sister's, so I am less worried there.

But, all in all, it's still making your best guess and taking a chance.

[CheffoJeffo]

Not meaning to reopen the discussion, but I was at a conference on Autism yesterday (there are lots of those) and there were some of the best presentations that I have seen in a while. Some of the findings are preliminary and won't be published for another year or more, but they are interesting.

But, to open, I've reread the thread and found that I was unnecessarily harsh with PBJ through the course of the thread and am sorry for that -- it didn't help things.

Sorry PBJ.

I'm curious, has there been any link showing that autism is hereditary?

This particular conference was sponsored by the folks running the genetic study that we are involved in (and we are now involved with two more studies as a result). They have identified a number of interesting genetic anomolies that they will be pursuing. One of the interesting findings was their estimate of Etiologic risk factors and the proportion of cases where they find "Autism in other genetic disorders" (of interest to me, because Mrs. Cheffo is a carrier of FragileX and FragileX is one of those genetic disorders).

Long story short, they are seeing data that suggest known, identifiable (but not specific) genetic causes (6 different ones) in 18% of Autism Spectrum Disorders. I think that is the first time that anybody has actually quantified the belief that Autism Spectrum Disorders are inherited. There isn't anything actionable in this, but it is good to see some data supporting conclusions.

I know kids who are autistic that people walk up and complement the parents on "such a good looking child".

Interesting ... there have been studies (and I do not have citations handy, so you'll have to take my word for it) that have reported that, on the whole, children with autism are more physically attractive than typical children.

Just another autism study with anecdotal evidence that frustrates the bejeebers out of me for the lack of useful or actionable conclusions.

The sad thing is that somebody paid for those studies ...

I now understand why they do this, although it's application to Autism Spectrum Disorders is still questionable in my book.

The idea is to create easily-administered and quantifiable screening for known genetic disorders -- so that a pediatrician can take some simple measurements and determine if a child (who may be too young to exhibit symptoms) should undergo genetic testing. There was a good presentation on this, although I didn't see a universal application to Autism right now, if we can link quantifiable physical traits to underlying genetic issues related to Autism, then we can identify kids much earlier. I'm not convinced, but know I understand why the studies were done.

We also heard what is, by far, the best presentation on Vaccines and Autism that I have ever seen. It refuted the specific evidence of linkage that I discussed with the biochemist at yet another conference (and talked about earlier in this thread). It was interesting that a gentleman stood up and questioned the mathematical methods and evidence and was openly hostile to the presenter -- I am all for questioning, but the gentleman in question was out of his depth (my training is in statistics and actuarial science, so I knows me my stats and, while this guy was making a reasonable point, he failed to understand that the point he was making had nothing to do with the testing done, the metholology used or the conclusions reached) and plain wrong.

The hostility (an example of which I displayed earlier in the thread for PBJ) seems to be a trait associated with being a parent of a kid with Autism. Another lesson learned.

And there was the usual application of politically correct terminology -- "neurotypical" and "neurodiverse" were the buzzwords for the day and there were t-shirts to that effect  -- bewildering science and reckless emotion (at some point in the day, nearly *everybody*, researchers included, breaks into tears at these things).

I came out of the day with a new book to read (I haven't read it, so this isn't a plug):

http://www.amazon.com/Autisms-False-Prophets-Science-Medicine/dp/0231146361

And that's what I did on my mid-autumn vacation!

Where's that damned :tommy icon ?

[ChadTower]

Just curious... do these studies have a tendency to show separation between high and low functioning or are the usually spread across the whole spectrum?  My experiences are almost all with kids that are on the higher end - the type that could easily be mistaken for an unmanageable pain in the ass rather than a kid with a diagnosed condition.  Physically functional enough to play good 7 year old baseball with enough extra remedial work and some socially functional enough to be in regular school classes while others are in special ed of one type or another.

[CheffoJeffo]

Great question -- and one of the biggest problems that parents and researchers face.

The question of diagnosis -- what is Autism or what is an Autism Spectrum Disorder ? To what degree ? What is an appropriate intervention ? How much funding ?

There are a number of criteria that have been used to diagnose Autism over the years, the most common of which I believe is still the DSM-IV definition (under which my youngest wouldn't be diagnosed as having Autism). Without doubt, the change of criteria over the past several decades has contributed to what has been labelled as an "epidemic" (along with general awareness of Autism). Is that the only reason ? I don't know -- both DSM-IV and IDEA (US legislation for education for kids with disabilities) are cited as reasons for the increase in reported cases, but both happened a decade and a half ago and IDEA applies only in the US.

One problem that I have faced is receiving reports from leading professionals who say that my child has an Autism Spectrum Disorder, then being rejected from receiving funding because my child doesn't meet the DSM-IV criteria for Autism, only for Pervasive Development Disorder - No Obvious Cause.

So, to answer your question, nope

We can't even find common ground as to the definition of what constitutes Autism or an Autism Spectrum Disorder or NeuroDiversity (tm?) or whatever, let alone classify how the affected children fall along that spectrum. That will continue to be the biggest hurdle in terms of getting an accurate portrayal of Autism in the media and the reason why that majority of folks like me think that people like Jenny McCarthy are half-informed, very fortunate half-wits who are not helping the majority of kids with Autism.

I definitely don't begrudge her the success that she has enjoyed wrt her son, but her blind arrogance and willingness to shoot her mouth off is harmful. My son saw benefit from the removal of casein from his diet (while my daughter didn't), but he certainly isn't "cured". I personally know families (we attended the conference with two of them) who have done everything that Jenny has done, and FAR more, and their kids haven't improved.  If we still can't define the condition, there is no possible way that anybody can claim that it can be cured and anybody who does, should be regarded with skepticism ... but also with hope, because sometimes things DO work for your kid, even if they don't work for everybody.

In terms of specifics, the still-pending DSM-V is looking to redefine the classification and diagnoses, although the direction that they will take is still not known (to me anyway). As an example, Rett's Syndrome, which has previously been classified as a form of Autism (or, more properly, a Pervasive Developmental Disorder) affecting girls, has now been identified as a specific genetic disorder and may be removed from the Autism/PDD classification, although similar things may be said about FragileX (my daughter is neither Rett's nor FragileX, although my wife is a FragileX carrier). It will be interesting to see what happens to eligibility of kids for programs/interventions based on those changes.

All told, this quagmire is a key reason why parents are the best advocates -- they know their children best and, while overwhelmed, emotional and not fully understanding what the hell is going on, are the best positioned to determine the appropriateness of various programs and interventions.

The story of Lil' Nintendoh, and his parents' awareness as to what his needs are, is a good illustration of this.

[Ninten-doh]

Jeffo,
Thanks for sharing what you heard at the conference.  I really want to go to one (or two or three) of these, but I just don't have the time.  I think the thing I'm most curious about is whether this is truly an epidemic or the results of shifting diagnostic guidelines.  I have nothing to back this up -- it's just my opinion -- but I think that genetics play a part, and we're seeing this dramatic increase because something environmental is "triggering" it more and more. 

Let me know what you think of the Offit book.  I'll reserve judgement until I read the book, but I can't help but be wary of a guy who made millons from developing a vaccine telling me that the vaccine-autism link is a crock.  Not saying he's wrong, but he's not exactly an unbiased expert either.

Thanks again for sharing!   

[CheffoJeffo]

De Nada -- if my attendance at these things can spare just one other parent having to attend to hear the same stuff, then it is worth it. Realistically, there are probably 12-20 of these these that we *could* attend in a year relatively local. They are all pretty boring and often depressing and, if your kids are doing better than most, you ended up feeling guilty. They suck. We have been picking ones that are convenient or have people that we want to see. Most of the ones I have been to aren't worth going to on an annual basis.

This was my first time at this particular conference and I will definitely go back every year that they let me (the fact that it was free for families who participated in the study was nice, but it is also the "sharp point of the spear" in terms of genetic and epigenetic research into Autism).

One thing that might not have been clear is that Dr. Offit was not at this conference and that the vaccines presentation was made by a French Dr. who also worked in England and now works in Montreal at McGill. It really did break down the arguments and addressed every issue that I have ever seen on the topic, including the mostly overlooked fact that there are actually multiple theories -- Thimerisol is only one of the suspects. He also addressed the findings about Autistic kids not excreting mercury, which really annoyed me because the answer was so simple. And he pointed out that the phenomenon of first noticing signs of Autism at 18 mos (when the MMR booster is given in North America) is also experienced elsewhere in the world ... in places where the MMR booster is given months earlier or not at all.

But, as I say ... some of these things that aren't scientifically valid, do work for some kids. My kids (neurotypical included) are off today for a week of "listening therapy" (aka Tomatis therapy). Scientifically, there is no evidence to support it and it surely isn't a cure, but my kids do better because of it. It lowers their stress levels, improves their focus and behaviour and, as a result, lowers my stress levels and those of Mrs. Cheffo. I tried to listen to the sounds once and it drove me over the edge, but it works wonders on them.

 

EDIT: For typo ...

[ChadTower]

Those "non scientifically valid" things could easily be solving a different problem and the people just don't know what.  When you have someone up in a news conference saying "I took X out of my kid's diet and now he's fine" no one ever asks them "so what is the science behind that result".  They just know they did something and now their kid has improved.  They rarely have any idea why.

[CheffoJeffo]

In an interesting twist of timing and small worldisms ... I just received an email from one of Mrs. Cheffo's sisters and it turns out that the economist who has most recently proposed that precipitation is linked to Autism (I had previously jokingly dubbed him 'RainMan') is one of her professors (she's doing her Executive MBA at Cornell).

http://www.johnson.cornell.edu/news/WaldmanAutism.html

He has also previously tested occurences of Autism against cable TV subscription rates and reported that it was a causative factor in 18% of cases, so I am a little suspect of his methods and conclusions.

As others pointed out back in 2006, "He's found it -- umbrellas cause Autism!".

Having said all of that, I would be interested to see the underlying data and methodology because, to my mind, there are several issues that would need to be accounted for and none of the press coverage, either now or in 2006, seems to talk about it.

 

[Ummon]

I've recently encountered someone who has an autistic son. As an infant, and on the doctor's insistence, he was subjected to an 'accelerated immunization schedule'. Apparently he didn't have any serious reactions, though she thinks the incident is what caused his autism. She skipped it on her daughter, who is normal.

On the diet thing, she's noticed that a gluten-free diet has helped in his overall development. Beyond that, though, she doesn't know much about diet and food quality in general, so I'm helping her with that, and I bet it will do even more for him.

On the 'questions' thing, I'd just tell 'em straight up. They may not understand all the words and meanings of things, but kids in general are receptive to intelligent answers.

[CheffoJeffo]

This morning I received a PM from a kindly BYOACer (Thanks again -- and I agree that Kaylee rocks!) pointing me to an article entitled New Theory Of Autism Suggests Symptoms Or Disorder May Be Reversible.

It is interesting that just this week Mrs. Cheffo and I were discussing the anecdotal observations behind the core premise of the study -- that our Autistic kids appear normal when they are feverish. We first noticed this a year ago when my youngest was running a fever of 105 -- he was almost completely "typical" in his behaviour. This past week has seen the stomach flu tear through Casa Cheffo and we noticed the same thing with both Autistic kids when they were running fevers.

And now this paper has been released. There may be something to it.

I had intended to refrain from posting until I had reviewed the paper behind the article, but I am finding myself out of my depth and it will take me some time to bring myself up to speed. Some of the potential therapies suggested are things that were discussed at that last big conference that I went to.

[shmokes]

I didn't reread this whole thread, so I might already have mentioned this, but has anyone here read The Curious Incident of the Dog in the Nighttime?  It is a lovely book, and the protagonist is an autistic 15-year-old boy.  I have a very good friend who coincidentally had an autistic 14-year-old boy when I read the book.  I had her read it and she was floored at how well the author nailed it.  Obviously there is a wide range of symptoms based on the severity of any given case, but apparently the kid in the book was a virtual mirror-image of her son.  At any rate it's a wonderful book which I suggest to anybody, but especially to parents of an autistic child because I think it would make them smile about things that usually don't.