Parents of autistic children have questions, science has answers

I am breaking form somewhat with this blog entry. It is not refuting anything said by anti-vaxxers. Instead, it is a response to genuine questions of a parent trying to come to grips with an autism diagnosis. The reason I am taking time to post this here is that there is so much misinformation out there for parents. Parents who want to do right by their children are inundated with bad information shared by charlatans. Even though the charlatans are vastly outnumbered by good scientists and doctors, they shout the loudest and can be hard to spot without formal training.

So here it is, formatted in a question-answer format. For the original post please check here.

1. How do doctors conclude that children who show deficits from birth, have the same condition as children who regress later in toddlerhood? 

Autism is a diagnosis of behaviors, not something casual. Usually, when we talk about illness we use a name that gives information on symptoms and causes. For example, if we say your child has the measles, you know that your child will have a rash and high fever (among other symptoms) caused by a specific virus. However, if we say your child has the stomach flu, that simply refers to the child having a fever and throwing up; there are dozens of causes of the stomach flu. Autism is more like the stomach flu: it refers to where your child is now, not how they got there.

So the reason that regressive autism and autism are diagnosed the same is that the endpoint is the same: communication and social deficits that have reached a predetermined level.

2. How do bright socially awkward children have the same diagnoses as low-functioning, nonverbal children?

This was a decision fundamentally made to make consistent diagnosis and access to assistance easier. It makes sure that kids have access to any and all services they might need. With spectrum disorders, it can be very hard to create hard cutoffs that don’t result in some kids losing out. By losing out, I mean that maybe a kid just barely misses the lower category, limiting what assistance he or she can have in school. As a result, the child is less successful. The full criteria is here and a bit complicated. But you can see clearly that these are wide benchmarks meant to encompass any child who needs assitance.

3. How did the number of autism diagnoses explode? 

I wrote an entire blog on this here, but will give you the short version. Numbers haven’t exploded. Like you mentioned, there is more awareness which leads to more diagnosis. But there is also the issue of diagnosis switching. For example, kids that before would have been given the label mentally retarded or intellectual disability (older general catch-all terms) are now termed autistic. (sources 1, 2, 3, 4) Additionally, mild cases are being included in the autism spectrum disorder. That expands the numbers too.

In the original blog, a sub-question was asked about different chemical causes related to the increase in autism. I’ll address that below in a question 5.

4. Why isn’t my child able to point to things he wants? 

The short answer is that we don’t totally know. The long answer is that pointing to something you want isn’t actually that simple. It requires you to identify your need (for example I’m hungry), recognizes that eating will satisfy that need, and identify something nearby that can be eaten. Then you have to recognize the cause-effect relationship between pointing out that edible thing to someone and them giving it to you. In people with autism, we frequently see that they seem to lack understanding of cause-effect. So I would guess that is where it goes wrong.

5. Why isn’t there consistency among professionals? Why do some say that parasites/heavy metals can affect autism and others don’t?

The truth is that there is significant consistency among true professionals. There are not reputable doctors that believe that parasites or heavy metals cause autism. Unfortunately, it can be very hard for someone without scientific training to identify reputable doctors. Anyone who graduates medical school should be able to read and understand the scientific research and convey it to parents. Parents should be able to trust that anyone with an MD is telling them the truth for the best of their child.

But that is simply not the case. For some reason, education doesn’t always preclude nonsense. Some doctors and some researchers are simply quacks.

Parasites do not cause autism. The belief that they do results from the treatment of autistic children with Miracle Mineral Solution (MMS) otherwise known as bleach. Some parents, under the direction of fake medical professionals force, feed their children bleach or given their children bleach enemas. This results in the degradation of the intestinal lining, which is then passed. To untrained parents, these parts of intestine look remarkably like dead worms. But they aren’t worms, they are parts of your child’s digestive tract being killed and removed with bleach. Other blogs have addressed the issue of parasites more fully; this is a particularly good one, but with some nasty images. The parasites some charlatans claim cause autism don’t even exist.

Heavy metals do not cause autism. For one, chelation (the process of removing heavy metals) has no effect on autism. That is because there is no difference in concentration of heavy metals in the brains of children with or without autism. When that was narrowed specifically to mercury for a more exhaustive search, there was still no difference.

The frustrating part about autism is that we really don’t know what causes it. We know that it is mostly genetic, with some prenatal factors involved (like the age of the mother). If you are unsure if a cause is being touted by a reputable professional, search “cause + science-based medicine.”

If you are unsure if a cause is being touted by a reputable professional, search “cause + science-based medicine.” Science-based medicine is a blog ran by researchers and doctors who do excellent research and post science and source based information on a variety of things. Or ask me, and I’ll do some research and post a blog as I have done with thimerosal and aluminum.

I wish I had a better answer for what drives people to lie to struggling parents, often to the detriment of children.

Andrew wakefield mansion
This is the Texas mansion of Andrew Wakefield, the the former doctor who lost his license for “deliberate fraud” and inappropriate, unapproved medical experimentation on children. He acted with “callous disregard for the distress and pain the children might suffer.”

The idea that some doctors would inflict harm for money is sickening to me, but I’m not sure what other motivation they could have.

6. Why do some children need to bite and self-harm? 

There isn’t a clear-cut answer for this. Some research has suggested that people with autism have different brain chemistry which dulls their ability to feel pain. Just like you don’t feel any pain when clapping your hands, they don’t feel any pain when headbanging. Despite not feeling the pain, the body still releases endorphins to combat it, resulting in the self-harming behavior being biologically rewarded. Interventions to prevent the dulling of pain has reduced self-harming behaviors.

7. In a pair of twins, why does one child have autism and the other not? (original post specifies that one twin has developmental delays but missed the diagnosis)

Autism is mostly genetic, which makes it unsurprising that both twins have some level of delay. It sounds like the twin without autism is likely borderline. On behavioral diagnoses, there is some level of opinion involved. Another physician may diagnosis him as autistic. I’m not sure. Or he may just be borderline. Without more information, it is hard to say, but if your other son needs assistance, I would recommend having him re-evaluated.

I would be happy to answer any more questions from parents. I understand how confusing the autism world is, and have long been frustrated with the difficulty accessing good information.

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