User:Neurodivergent/Neurodiversity

It's not my intention to pretend I don't have a POV here. You can read all about it below.

Why autistic?

I have known about Asperger's syndrome for many years. When I first read about it, it hit me like a ton of bricks. I was hyperlexic as a child, and I've always known I'm different from most everyone else. I'm good at certain types of things, but clearly not so good ("stupid") at others. I'm also not very good at expressing myself verbally. In a social situation (which I generally try to avoid) I've always been astonished at the natural ability neurotypicals (NTs) have to know when it's ok to interrupt during a group conversation, to respond in a socially acceptable, interesting manner, etc.

Learning about Asperger at first had a negative impact on my self-esteem, after all, it is considered a disorder by the medical community. But I had my doubts, considered other possibilities, and mostly ignored it, meaning I didn't research it all that much.

That was until my son, 3 y/o at the time, was diagnosed high-functioning autistic. I think the HFA label was simply more acceptable/fashionable than autistic, because I do not believe he could be said to be high functioning about almost anything, except he does appear to have a high spatial intelligence. After my son was diagnosed I started to research and try to understand autism, and started out at pretty much the same emotional place any NT parent would. If you read any of the mainstream literature on autism, you get the impression that autism is a no-good monster that needs to be eradicated from the phase of the earth.

My son's psychologist confirmed that I'm likely Aspie, as did his speech therapist later on. My wife, of course, knows too well that I am Aspie.

I also found out that my father did not speak until the age of 4. His mom apparently worried he would be mute. I'm also told that when he entered school at 5, his grandfather had to sit next to him, otherwise he would run out screaming. Unfortunately not much else is known. He was born in the 1940s, so there's no chance he would've been diagnosed unless Kanner himself had done it, but it is clear to me he was HFA. I should note that my dad does not consider himself HFA or Aspie now, and dislikes such suggestions. His behavior is so close to NT that it's unlikely he would be formally diagnosed either. He does, however, report some autistic thinking abilities, like the ability to visualize problems easily. He graduated top of his engineering class when he was in his 20s.

So my dad is one of those cases where a "miracle cure" was found I suppose. I should ask him what that was. It was perhaps like others that have been reported.

One of my brothers also suspects he's either Aspie or ADHD (although that's not believed by the rest of the family). Another brother of mine has some characteristics, but not enough to say anything for sure. My brothers, my dad and I are all engineers, as is my son's grandfather on my wife's side, also a suspected Aspie (which is interesting in regards to assortative mating). An aunt of mine says that my grandfather on my mom's side did not speak until age 5, and that some of my uncles were late talkers as well, but this is very disputed by my mom.

Being Aspie has brought me some problems, that's for sure. My wife could fill you in. I even had anxiety and panic disorder for a while. But overall I like being Aspie. I have learned to derive self-esteem from having that label. I would reject any attempt at curing me, and I hope my familiy continues to be an autistic family for many generations to come (though we are obviously at a disadvantage due to lack of ability to pick up members of the opposite sex).

Some people would doubt that I'm autistic due to the fact that I do well at my job (I currently work from home), make a reasonable living, am married and generally function pretty well. I do still fit the full DSM-IV diagnostic criteria, though, due to "clinically significant social impairment". But even if I were to work around that, it would be stupid to claim that I stopped being Aspie.

Autistic self-esteem

Autistic people, diagnosed and undiagnosed, tend to have low self-esteem, often coupled with anxiety and depression. (Many of them even contend that anxiety and depression are untreatable in autistics, a position which I happen to disagree with, from personal experience).

In undiagnosed persons, the source of the low self-esteem is generally a sense of being inferior to everyone else. Society tends to view intelligence as one-dimensional. You are either smart or dumb. (A more sophisticated but still simplistic view is that some people are street smart and others book smart). So even when the autistic has talent or intelligence in some area, or does well academically, he still feels that he's somehow faking it. He feels he's dumb in reality, but manages to try hard enough to pretend to be intelligent in a few areas. This way of thinking can easily be dispelled by understanding how the brain works and learning about autism.

Diagnosed autistics still have low self-esteem from that and from being mistreated. But I think much of the self-esteem comes from having a label attached which describes a pathology as opposed to a way of being. They are constantly bombarded with information that says autism is horrible and must be erradicated. In other words, they are told time and again people like them should not exist. Low self-esteem is to be expected under the circumstances.

Self-esteem is a problematic concept anyway. It implies that one must have something to be proud of. It would be much better to accept oneself regardless.

Some advise I'd have for parents of autistics (and neurodivergent children in general) is not to have them believe that their brain is broken. I don't care if that's the position of the entire medical community. For the sake of the child's self-worth, he should be told that he's unique, special, non-conventional; that it's ok to be different; that it's not necessary to be as good as others in everything. The child's behaviors should be accepted, not abhorred.

My take on the "autism epidemic"

I believe there isn't a real autism epidemic. I've analyzed some of the California DDS data [1] myself. They have a quarterly client characteristics report broken down by regional center. The data available online is only for a few years, but it's useful.

I found that prevalence of autism in California depends very much on where you are. There would appear to be a positive correlation with population density but that's not clear-cut either. Rather, it would seem that pediatrician culture and awareness varies from one location to the next. And while prevalence seems to be leveling off in high prevalence areas such as Los Angeles, it's still increasing rapidly in places with low prevalence like Fresno. I do not believe the regional variations can be accounted for by the vaccine theory or the Folic Acid theory. A genetic theory of prevalence increase, while intriguing, also appears to lack significance once you look at the data per region.

I can also give some anecdotal evidence of this phenomenon (aside from my dad's case). Where I'm from I often hear of kids who have not spoken by the age of 4, 5, 6. They are never taken to see a psychologist, and pediatricians don't generally refer them to be seen by psychologists. (That trend is changing as you can imagine). Generally I guess these children develop spoken language and are mainstreamed. They might be regarded as shy, absent-minded, or geeks later on, but that's about it (which has advantages and disadvantages for these kids). One time my wife was listening to a program on the radio (where I'm from) with a guest psychologist, and a listener called with a question about her teenage son, who had been a late talker, and now was shy and did not want to speak at all. The psychologist proceeded to describe possible occurrences in the teenager's life that might have led to this, without once mentioning what I believe is obvious and likely helpful in this scenario.

In the US, would it be possible these days for a kid to not be speaking at 4-6 and never get a diagnosis of anything?

Another indication is that there's no equivalent increase in epilepsy, which you'd expect due to its known correlation. Plus most of the new kids being diagnosed are reported not to have cognitive deficits.

So why is it that diagnostics of something like autism and ADHD are increasing but not other disorders? Could it be that there's a trend to pathologize human diversity perhaps?

One important consequence of the autism "epidemic" not being real (and believe me, it isn't) is that all past knowledge about percentages of autistics who are mentally retarded, "recover", are non-verbal, etc., are all wrong. This in itself puts in doubt all the claims about "miracle cures", studies about therapies that do not use any control groups, and so on. California reports about a 300% increase since the 1980s, the bulk of it within the last 10 years or so. To take an example, this means that if 50% of autistics were believed not to develop language before, that should actually be about 15% now (and even less if you consider those who are still not getting diagnosed).

Neurodiversity vs. real disorders

If you read the autism rights movement article you might be wondering how it might be possible for autistics to not view their condition as a disorder, but just the way they are. I don't agree fully with anti-psychiatry in that I do believe some real disorders exist. In fact, I've been an anxiety sufferer and know that quite well. This is how you tell if a disorder is a real one as opposed to something that's been defined as a disorder due to lack of tolerance:

The sufferer is actually suffering from the disorder, not from mistreatment by others, lack of accomodation, or due to low self-esteem after being called 'disease' repeatedly.
The sufferer wants to be cured. (Thinking that the sufferer "must" want to be cured doesn't count).
The condition has been shown to be life-threatening, or that it reduces the sufferer's life expectancy significantly.
The condition has been proven to be pathological in nature. ("The entire medical community believes so" doesn't count here either -- we autistics couldn't care less about authority or conformity).

There are conditions which may be considered part of the autism spectrum that arguably are pathological, such as Fragile-X syndrome and Rett syndrome. This is arguable because in one case we're talking about a genetic abnormality and in the other a "pathogenic mutation". They are still genetic, though, i.e. if you are born that way, it's the way you are, not something you caught from the environment by accident that one could hope to remove.

One thing I find amazing is that there isn't an ADHD self-advocacy movement of any significance, for example. It seems to me ADHD adults (probably 5% of all adults) do buy into the promotion of human diversity as pathology. Just as homosexuality was dropped from the DSM, one would hope ADHD adults to be at the forefront of a campaign to drop neurodiversity from the DSM. We can't expect to have autism accepted as neurodiversity before ADHD is.

A notable analogy about diversity vs. pathology is documented in the short stature article. Where do you draw the line and who decides?

The neurodiversity view is not as radical as some might think. Even well-known autism researchers such as Simon Baron-Cohen have allowed for the possibility in certain cases[2]

My take on autism vs. Asperger's

Research that has compared HFAs with Aspergers has not found a distinct profile for each group [3]. Anecdotally, this is clear in my case compared to my dad. And you never know, but it's possible that my son will appear to be less autistic than me at my age. I accept him for who he is regardless.

Why I think it's genetic

There's a common belief that even though autism has a strong genetic component, it is somehow environmentally triggered. There's really no good reason for this belief other than expectation. That is, people go in assuming that since autism is a horrible thing, it can't just be a genetic variation. Something had to have gone terribly wrong, so they spend a lot of time and effort looking for these things they suspect are there -- and they suspect they are there just because. There's a reason why they keep trying to find or prove these things and they can't, at least not in a generality of cases.

Studies put co-ocurrence of autism in identical twins at about 90% for a broad spectrum. It's about 2-4% in fraternal twins and sibblings, and 10%-20% if a broad spectrum is considered. There are a number of questions that come out of this:

Why isn't it 100% in identical twins?

Autism is one of the most genetic conditions there are. It is even more heritable than personality or IQ. To find something that is clearly more heritable than autism, you need to look for things that are evaluated objectively, such as eye color (incidentally a good analogy). Note that even with something like Rett syndrome, which has been decyphered and is known to be caused by a "pathogenic" genetic mutation, identical twins don't necessarily show identical development [4]. Not finding 100% co-occurrence can easily be explained through developmental differences and human error. I do also grant that it's possible that in a small minority of cases it's an environmentally-caused condition (a phenocopy) that looks like autism, even though this remains speculative.

Why isn't co-occurrence in siblings close to 50%?

This question is brought up by the fact that we share 50% of our genetic makeup with our siblings. All this means is that autism cannot be accounted for by a single gene. If 2 genes were needed for autism, you'd expect sibbling co-occurrence to be about 25%. So we really need about 3 genes or more for a proper model. (Some researchers speculate that there are many different yet unknown conditions that fall under the umbrella we now call "autism", which makes finding a model a whole lot more complex than this). So in order to decypher autism researchers should not be looking for rare mutations, but rare combinations of alleles instead, regardless of the frequency of each allele. Given the prevalence of autism, if we're talking about 3 alleles or more, it's obvious that each allele must have high frequency in the population. So far, findinds about genes associated with autism are largely inconclussive and demonstrate the huge complexity involved.

Why are parents of autistics typically non-autistic?

This is due to the same reason. Children share 50% of their genetic makeup with their parents. You'd expect then that about 10-20% of parents of autistics to be in the spectrum (just like siblings). My guess is that it's quite a bit lower than this. And there are several reasons. One of them is that autistics are few and far between and are generally not good with relationships, so most couples that have autistic children would be ones where neither partner is autistic. Conversely, if a family has one autistic parent and one autistic child (as in my case) the odds that a new child would also be autistic are rather high, probably above 50%. I speculate that assortative mating can be assumed to have played a role in this scenario.

The concerns of parents

Unlike most other autistic self-advocates, I do understand what it is like to be the parent of an autistic child. These are some of the most common concerns:

The child is way behind its peers

Parents many times start to worry after comparing the child's development with that of relatives or neighbors' kids. Is there a reason why every child should develop at exactly the same pace? Slow development is not necessarily bad, and does not necessarily indicate something is broken. Consider the development of a human baby compared to that of other species. Is there something wrong with us humans that causes our development to be very very slow? Einstein had this to say about slow development:

The normal adult never thinks about space and time. These are thoughts that he has thought about when he was a child. But since my intellectual development was retarded, as a result of which I began to wonder about space and time only when I had already grown up. Naturally, I could go deeper into the problem than a child with normal abilities.

I think there's more to it than that. I don't mean to suggest that all autistic children are potential Einsteins. In many cases slow development might in fact be pathological. But it is necessary to dispell the myths of slow development and stop underestimating the potential of autistics. A diservice is done to the child whose perceived capacity to achieve is based on age-based comparisons with peers.

The child throws himself in front of cars

My son is not aware that moving vehicles are dangerous at this point in his life. I'm sure a 1 y/o neurotypical child would not be aware of that either. Does that mean the 1 y/o's cognition is broken, or simply not developed yet? So in many ways I need to take care of my child as if he were a baby or a young toddler. This is clearly difficult, but it is not a horrible tragedy.

The child's behavior is weird

Is that really a problem as perceived by the child, or is it simply embarrasing for the child to be different from everyone else? A more problematic issue is whether the child will be able to attend mainstream schooling, and even if he does, whether he'll be the target of abuse. These are tough problems. School can anyway be extremely stressful to autistic kids. Possibilities for dealing with this include delaying school entrance and home schooling.

The child injures himself

This is a very difficult one to address. My son did this to some extent when he was a lot younger, before he was diagnosed. One time he drew blood, but he mostly stopped after that and the behavior was phased out. This type of behavior is due to sensory issues sometimes. They just don't feel pain as much as a neurotypical child. It can also be a form of self-stimulation, and it happens more frequently when there's stress. If it's possible to find out what the child is getting out of it, a replacement behavior can be determined. If the behavior is caused by seizures, I would not be against the use of anti-seizure medication in this particular scenario. But I would definitely not recommend aversives. Behavioral approaches in general are not believed to be effective in controlling self-injury. Autistic adults who have this problem sometimes have a helmet in hand. I'd also note that autistic adults who are well known and respected now had this type of behavior at some point, e.g. Amanda Baggs.

My take on ABA

My wife and I heard about ABA from very early on of course, and we considered it. We own the Lovaas book, and the Work in Progress book. I had to do some research first. ABA is very popular and many parents appear to consider it "a cure" of sorts. Look, if your child is neurologically different, maybe he can learn to pretend to be typical, but he'll remain neurologically different.

ABA is often presented as a therapy that is known to be effective. That is a bit strange considering that no double-blind studies (or anything close) exist as of yet on ABA. Since the so-called autism epidemic is not likely real, the Lovaas results don't strike me as impressive. It's unclear if test groups are representative of the autistic population as a whole. There are no controls. Attempts to replicate the initial studies have not yielded comparable results.

After reading the main Lovaas book on the subject you immediately realize that this "breakthrough" treatment is really the same as a methodology you'd use if you wanted to train a dog perform tricks. This is in addition to the fact that Lovaas recommends hitting the child in the rear, not when the child misbehaves, but whenever the child is "acting bizarrely." Lovaas declares that your child does not have the right to do so.

Today ABA "without aversives" is heavily promoted. It's good that they aren't physically abusing children in many cases, but what about the emotional abuse of the recommended 40-hour-a-week pressure these kids need to endure? I know, for example, that my son does not take well to pressure of this kind. I wouldn't. Autistic kids are very sensitive to stressful situations, and I'm surprised they haven't found they come out "more autistic" after ABA. Oppositional kids (like my son) would actually detect and protest such attempts to make them conform.

I generally wouldn't be against a little ABA (maybe 1 hour a day) used as a teaching tool, so long as the child does not appear to be anxious during the course of it. The goal of making the child be "indistinguishable from peers" is highly questionable as I see it.

Some parents have reported horror stories regarding ABA already [5]. They say the resulting posttraumatic stress disorder is because of therapist incompetence. I wouldn't be so sure about that.

A big problem with ABA is that it only became popular in the mid 90s. So the bulk of adults who have undergone ABA will only start to appear in the mid 2010s. They could very well be the next wave of adults needing psychotherapy for a variety of problems, primarily anxiety and depression. This is not far fetched. If you are neurologically different, but you have been taught to constantly act as if you were neurotypical, just the energy required to do that has to take its toll. (That happens even without ABA, trust me).

So a big reason why I don't put my son through ABA is the same reason I wouldn't give him a potential carcinogenic, Ritalin, even though his neurologist has suggested that we might consider it (as he's much more hyperactive than your average ADHD kid).

My son does do speech therapy. This is because my wife believes he should "do something". I kind of see it as a replacement for school. He mostly doesn't protest when we take him there, so I'm mostly ok with it. I've argued with my wife that there is no scientific evidence that speech therapy is useful in any way. Steven Pinker explains that grammar is not something we acquire analytically. The human brain is already adapted to produce grammar and its possible variations in each language. So before Broca's area of the brain has developed enough for grammar to be produced, the child will either not speak or only utter words. They way a child's speech develops is not gradual. It's not like he knows 50 words one month, 60 the next, then 70 and so on. It usually goes like this: 50 words for long while, then it suddenly jumps to like 400 in a very short period of time. I don't see speech therapy playing a role. Maybe it can teach him some words and help with pronunciation.

School

On my wife's insistence, we had my son enrolled in preschool/daycare at the age of 2.5. I think that was a mistake. The experience was fairly traumatic for him, particularly the first day, where I understand he cried himself to sleep (or perhaps experienced a shutdown). They also tried to potty train him there, with negative results. Until recently he still had echolalia about what we believe are things that were said to him to encourage him to use the potty. By the age of 3, when we started to seek a diagnosis, he was even shaking from time to time. We took him out of that school immediately. He's been a lot happier as a result. The speech therapy school he now goes to is not as stressful for him I gather, but I think it would be even better if he took a break from that as well.

Jasmine O'Neill says that school is the "end of bliss" to an autistic child, and I agree. Other parents have noticed how their special kids are treated in school (both by teachers and classmates) and have decided to try home schooling instead, at least until the child appears to be ready to go back. This is called deschooling.

My take on The Einstein Syndrome

Thomas Sowell's book, The Einstein Syndrome, is probably a good book for parents of autistic children to read. This is in spite of the fact that Sowell is an economist, likely doesn't really know what he's talking about, and has been correctly characterized as a charlatan.

Sowell has a son who was a late-talker whom he did not like being labeled autistic. This is because autistic implies pathology, of course. But instead of arguing for the acceptance of neurodiversity, as I do, he decided to invent a new "syndrome", not medically recognized, called The Einstein Syndrome. This is a syndrome where the affected person is not only normal, but rather superior intellectually to the rest of the population.

Parents will recognize in their autistic children many of the features Sowell describes, some more than others. The many anecdotes about outstanding individuals are inspiring, and give a sense that it's too early to discount the potential of the child.

This book should not be read by parents of autistic children in a way that supports any form of denial, even though it's written that way and it's often read for that purpose.

A positive aspect of Sowell's approach is that he promotes acceptance of the neurological differences observed in a child. He's against any form of "early intervention" in the cases he characterizes as Einstein Syndrome. A negative aspect, of course, is that it could very well be giving false hope to many parents.

The book could also be applicable to Aspie children, although it deals primarily with children who have speech delay.