It is not easy. As a parent of two young children on the spectrum in the US, let’s just say we are very fortunate that I have a good salary. My spouse has not been able to return to work (formerly a well-paid professional) due to the time demands of coordinating care for our children.

Government-paid services only account for a minor fraction of the services my children receive. The intensive early behavioral intervention (ABA therapy mentioned above) is very costly, and not covered by my otherwise excellent health insurance. Even though I make a good salary, if it were not for some investment income, our monthly expenses would put us in the red.

Suffice it to say that families less fortunate than mine find themselves up the proverbial creek… I have known families who had to make the difficult decision to withdraw their child from the early intervention program that was clearly benefitting them because they simply could no longer afford it.

This does not even factor in the long term costs – the unemployment rate for adults on the spectrum is obscene. What happens when the parents become old and infirm? It is unlikely that they have been able to save for retirement with the costs of caring for their child(ren). Though there certainly are some adults on the spectrum who have ideal outcomes and are self-employed and could even comfortably support their elderly parents, I suspect it is a small minority.

It’s questionable if someone could even maintain a waitress job with a younger child with autism. Where do you find appropriate child care? If your child receives Early On, Special Education services that may help, but it’s unlikely that will cover a full time job and it may actually take away from the hours that you can work.

Exactly. Some lucky people don’t understand how much it costs to work. Clothes, transport, childcare, etc. Impoverished people are often in a lose/lose spiral. I hate to think of how hard it must be to function as the mother of a child with ASD who’s also struggling financially. To see them being judged as not caring/not bothered about their child’s progress is literally sickening. I personally know women, friends with children on the spectrum, who struggle desperately even with access to universal healthcare, excellent school and support programmes, and financial assistance.

How they’d cope in the US is just beyond my grasp. How I’d cope as a disabled adult is not something I can bear to think about, let alone if a child was involved.

It’s questionable if someone could even maintain a waitress job with a younger child with autism. Where do you find appropriate child care? If your child receives Early On, Special Education services that may help, but it’s unlikely that will cover a full time job and it may actually take away from the hours that you can work.

Some folks are lucky enough to have a grandparent that can help out, but a child with autism is more likely to be too much of a challenge for an older person.

” If we find a set of parents who did not seek speech therapy, did not seek ABA, did not search out horse riding while being chelated, they will be parents for whom the developmental trajectory of the child was of no real concern to the parent”

Or, we find parents who, as per the article we’re discussing, cannot access these interventions because they lack the substantial privileges of access to healthcare, disposable income, and free time.

If someone is working at two jobs just to be able to feed and shelter their family then they’re unlikely to be able to devote substantial swathes of their available resources (in terms of time and money) to one of their children. If they speak Lao or Xhosa instead of English or Spanish, then the climb to access help becomes even steeper.

Now obviously you read the article, rather than merely skimming for keywords that you could use as platforms to promote a biomeddling agenda, so none of this will surprise you. As you know the article (and original research) states:

” . Among young children with severe autism, those most likely to “bloom” are those without intellectual disability and those with more educated, nonminority mothers. Although we are unable to identify the specific mechanisms through which socioeconomic status affects trajectory outcomes, the intervening variables likely include home and neighborhood environments, quality and intensity of treatment, quality of education, the efficacy with which parents are able to advocate for their children with institutions providing services, and many other factors in various permutations. If this heterogeneity in outcomes is associated with parental and community resources, then equal access to early intervention and treatment resources for less-advantaged children is vital.”

The United States is not a good place to be socioeconomically disadvantaged, full stop. Add a disability or chronic health issue to financial hardship and, whether you’re the patient or the parent, life becomes a lot like trying to empty a lake with nothing more than a fork.

Think of how much each appointment with your pet quack DAN! doctor cost you. Remember the time it took you to get there and back. If someone’s making $3 an hour (plus tips) as a waitress, has no healthcare benefits and no paid leave, and relies on public transport, how can she afford that option? In fact, how is she even supposed to know it exists? Using wild, uninhibited guesswork here, I doubt her schedule is filled with Autismommies coffee mornings, hanging out on MDC and AOA, and a yearly pilgrimage to FraudismOne.

If NT children are spectacularly educationally disadvantaged by financial hardship and minority ethnic status, then non-NT kids are screwed.

There you have it. Frankenstein cures autism.

Actually, I’ve peeled my nails from childhood to just recently. Don’t bite, just any rough edge or unevenness really bugged me and I would peel it off to the quick. Of course this makes my fingers unsightly, but I always viewed the nuisance of breaking the habit far more work than the benefit of having lovely nails.

No dietary change has ever effected the habit, nor did taking anti-depressants. But there is one strange thing. A few years ago I had a cortisone shot in my shoulder. A couple weeks later I noticed my nails were much longer than normal. I hadn’t had any urge to peel them. Gradually the urge came back, nails back to their unattractive state. A few months ago, I started taking a medication for a possible autoimmune disease. Once again, after a month or more I noticed that my nails had grown. Again I had forgotten to be bothered by them. I doubt that it’s placebo response, because I’ve taken lots of other medication without that effect. But then again it could be just some radom coincidence, I really don’t know.

It is sometime hard to know what to do with these unexpected, possible connected, possible coincidental benefits. Sometimes a clinician notices them, someone does trials and presto, you have a new use for an old drug. Sometimes it turns out to be nothing.

But as the patient noticing the change with no data to go on…it’s hard to know what to make of it. Oxbviously, it’s a small things. So I don’t really need to make anything of it. Just a curiosity, I guess.

Sorry for the off topic ramble.

BTW, pica is frequently triggered by nutrient deficiency, so it is indeed not surprising to see it go away with correction of the deficiency. Of course, nailbiting *can* spontaneously resolve…. In fact, in most nailbiters, it eventually does. I do not see how your son’s experience with nailbiting and zinc supplementation has anything at all to do with treating autism.

“Of course, if someone could show me something that indicates that all children go through a phase where the bite off all of their fingernails, well past the fingertips, then maybe our observations were ‘all random chance’ and his improvement was the result of a developmental spurt.”

Is everything all black and white? Of course not. You don’t need to know that *all* children go through something to be skeptical of a treatment’s effectiveness. But if *some* do, then it’s cause for skepticism, and you’ll need to know *how many* get over it on their own and when before you make serious conclusions.

You are convinced zinc cured your son’s nailbiting. That’s possible. You present this as implication that it has something to do with autism, since that’s the context of the discussion, yet plenty of chronic nailbiters are not autistic. (Probably a majority of them; it’s actually pretty common. And yes, to the point of bleeding, yes, well into the nailbed. Some continue into adulthood, by which time they’ve tried everything short of straightjackets. And some have even tried that. But most eventually stop.) But you demand to be shown something indicating *all* children go through a phase like this before you are willing to consider it may have been chance?

My daughter is a serious nailbiter. I haven’t had to trim her nails in years. It was at least as bad as your son’s. We tried everything. We had her on vitamins, on the presumption of pica since she likes to chew on things. Didn’t do a thing. So there’s my N of 1 against your N of 1. You see how we cannot make a conclusion at this point about the effectiveness of zinc?

“I am sick to my stomach at the thought of another child *not* getting something as simple as zinc supplementation because they believe the underlying narrative of Dr. Gorski’s post, that observations of improvement are “nearly always due to random chance alone”.

Well, you go be sick to your stomach. But that is not Gorski’s point. His point is that we know improvement can be due to random chance, but we don’t know how often, and until we have some sort of idea how often, we’re *fooling ourselves* if we act certain that they are not random.

That’s correct. It was not my claim And it was not a general claim. It was the claim of a particular person with HFA.
(It wa not Jeremiah, though. My reply to something this person said set Jeremiah off on a quest to discover my identity whilst issuing veiled threats of personal harm)

I don’t understand why studying the way children progress gives you a bad feeling for the future;

It is because I do not believe that studies meeting such stringent requirements are possible; we cannot ask parents not to try interventions that might affect the outcome of the study. If we find a set of parents who did not seek speech therapy, did not seek ABA, did not search out horse riding while being chelated, they will be parents for whom the developmental trajectory of the child was of no real concern to the parent; the last population that will help us understanding children who do need real help.

you seem more concerned, indeed, about the *tone* of this sort of effort, and the possible implication that maybe biomed won’t turn out to do very well once we know more about how kids with autism progress.

I seem concerned that the ‘tone’ of the article is based on a caricature of the available data; there are controlled trials that are validating some of what the biomedical community has been saying, but none of that seems to have any interest for Dr. Gorski if there is an opportunity to ignore it and paint a group of parents as hopelessly confused, pattern seeking antivaccine zealots.

The reason that this sticks in my craw is that I am terrified of another child suffering like my son did, needlessly. When my son was about two, he had no fingernails, at all. He was constantly, all the time, biting them. We just could not physically keep him from biting his nails without some type of Hannibal Lechter style physical restraint. [I would note that this is not a 'typical' behavior, and the constant attempt to characterize autism as simply 'developmental delay' misses the behaviors a lot of saw by a light year. While some facets of autism involving communication can be characterized as delayed, others, such as self injurious behavior, repetitive behaviors, or sensory integration problems are *not* 'typical' behaviors that all children start with and then grow out of. It makes for a good way to toss in the accusation of the confirmation seeking parent to characterize autism as a model comprised of solely of developmental delay, but it is a false model.]

When we went to our first DAN doctor appointment, we told the physician about our son’s incessant nail biting (among other things). She said, ‘this kid is low in zinc.’ We drew blood, and sure enough, his zinc was very low, a finding that has subsequently been seen in the literature (i.e., Infantile zinc deficiency: Association with autism spectrum disorders which studied over a thousand children, or The plasma zinc/serum copper ratio as a biomarker in children with autism spectrum disorders which looked at over two hundred.) We supplemented zinc and my son flat out stopped biting his fingernails that week. Now, he wasn’t ‘cured’, he still has himself a boatload of autism, but the change was predicted by our son’s doctor, they were real, and the change was not subject to placebo or pattern seeking (‘does he have fingernails, or not’?) and we weren’t the only people who observed it. (his pediatrician at the next visit: “well, his nails look a lot better”).

Of course, if someone could show me something that indicates that all children go through a phase where the bite off all of their fingernails, well past the fingertips, then maybe our observations were ‘all random chance’ and his improvement was the result of a developmental spurt.

I am sick to my stomach at the thought of another child *not* getting something as simple as zinc supplementation because they believe the underlying narrative of Dr. Gorski’s post, that observations of improvement are “nearly always due to random chance alone”. That is a false narrative. So that’s the tone I have concerns over.

And more than that — better understanding the natural course of an autistic child’s development could very well yield *new* approaches for treating autism.

Sure, but I’m a bit skeptical considering the heterogeneous nature of autism, but as a general rule, sure.

ABA was good for our kid, but probably not so good for others, and I think it largely hinges on the quality of the therapist.

- pD

That does ring a bell. If I remember correctly, that was “petrossa”, right?

@trrll – I don’t think you would have to resort to PET ligands for such a study, though they would have some advantages. There is already a wealth of MRI tractography studies showing differences between individuals with ASDs and typically-developing peers. A longitudinal study should be able to detect a change in such imaging signatures in the individuals who “lose their diagnosis”, similar to the EEG change over time mentioned in the Dawson study included in Gorski’s original post. Perhaps those longitudinal imaging studies have already been done. It wouldn’t surprise me at all if those imaging signatures remained in the individuals who “lose their diagnosis”, which would argue that they have simply become very skilled at “blending in” when needed.

That doesn’t paint a very good picture for the future, as far as I am concerned. While this thread had a ‘biomed’ angle, shouldn’t this also apply to ‘conventional’ treatments; i.e., speech therapy, ABA, OT?

Of course. I don’t understand why studying the way children progress gives you a bad feeling for the future; I know you’re concerned about biomed treatments getting short shrift, but really, you seem to focus far too much on “tit for tat” and not enough on what sort of research actually is done. You seem more concerned, indeed, about the *tone* of this sort of effort, and the possible implication that maybe biomed won’t turn out to do very well once we know more about how kids with autism progress. But how is that a bad thing? If a treatment (any treatment*) isn’t effective, don’t you want to know?

And more than that — better understanding the natural course of an autistic child’s development could very well yield *new* approaches for treating autism. And that can only be good.

*Yes, that can include ABA, though personally I’m hesitant to call it a treatment. I’m personally unconvinced ABA is superior to or even meaningfully distinct from many other forms of intensive positive-reinforcement training. I think it exists as an entity primarily to facilitate insurance payment for it. Which isn’t totally a bad thing, but as with any standardization of education, there is the risk of becoming hidebound.

I don’t think BillyJoe was claiming that, but rather, relaying the statements of another poster, who himself, claimed:

a) he had autism
b) he had no empathy and/or emotion

Now is the time where I guess we can start to tell that person (jerimiah?) that he doesn’t really have autism, as you know, that’s the kind of thing that is OK in some circumstances.

The assumption that autistics lack emotion and empathy is false and hurtful, on a par with the assumption that all people of African ancestry love watermelon, fried chicken, and have natural rhythm.

I suggest you educate yourself, by reading what autistic people say about their own experiences of emotion and empathy. You might start with Autism and Empathy and The Loud Hands Project

We had a poster here some time ago who has HFA. Over time he was able to mimic “normal” behaviour so accurately that no one could tell he had ASD. But, in reality, internally he was no different. He still did not have empathy and emotion, he merely learnt how to fake it and he found he got along much better as a result. In fact, in his opinion, he is a superior being because he can make decisions unimpeded by emotion. He even conjectured that evolution might be pushing Homo sapiens in this direction.

Perhaps he will see this article and post a comment.
(I won’t link back to the original article because that’s where I and Jeremiah started our infamous exchange)