Tracking IQ over a 3-4 year period, in 4 sub-groups of 2-8 year olds
Today’s post is about trajectories of intellectual development in autism, which I have to come to believe is the most important aspect of autism and certainly helps you understand where your type of autism fits in.
As regular readers may recall average IQ = 100 and the IQ scale fits a bell-curve, so most (68%) people have an IQ within the range 85-115. 2.1% of the general population have an IQ less than 70, which is the cut off for a diagnosis of MR/ID (Intellectual Disability).
There are special tests to measure IQ in non-verbal people and IQ testing is matched to your age; so the older a child gets the more there is expected from them in the test.
I do wonder how you can fairly test the IQ of a 2 year old with severe autism. So I think some testing in very young children may substantially underestimate IQ.
A study was recently published taking data from the Autism Phenome Project run by UC Davies.
Even though the sample size is only a hundred, what makes it interesting is that it is a longitudinal study, meaning they collect data from the same kids over a period of many years.
They fitted data from the hundred kids into four groups and then took the average IQs within each group. The kids had IQ measured twice, not at exactly the same ages, but about 4 years apart. (The youngest at T1 was two years old and the oldest at T2 was eight)
I used their data and apply my interpretation. I do not think they made the most of their own data.
So the first group (black) are the Asperger’s kids who were 22% of the sample group. This group started out at 2-3 years old with IQ just under 100 but in the next 4 years they raised their cognition at an above average rate, so that average IQ rose to 110. Not bad going. Average IQ in the general population is 100.
Classic autism is the red group at the bottom and as expected their IQ starts out low and gets worse, because they add skills at a lower rate then NT kids, so even though they learn, their measured IQ falls. This group was 26%. Even though the sample is very small at 100, this is close to my estimate of classic autism (SDA) being about 30% of all autism. In some countries you have to measure IQ to access services. Our behavioral consultant was not a fan, because the parents get upset when IQ goes down over time, so we never measured IQ. The red line is even lower than I had expected.
The green line I called responsive autism, because even though IQ is low it does not fall during the 4 years period where it was measured. This group account for 18% of the total. These children are acquiring new skills at a fair rate.
The good news is the blue line; in that large sub-group of 35%, the kids had some kind of “dysmaturation” at time 1, allowing them to make rapid cognitive improvement in the 4 years after their diagnosis (Time 1). They have gone from a technical definition of MR/ID to getting close to average IQ.
It would be great to see what happens at Time 3. I suppose if we wait 4 years we may find out.
I think some of the 35% (blue line) likely did not perform to their full ability at the first test (at time 1), for which there are numerous reasons, not liking/being familiar with the tester being an obvious one. Based on other sources from this blog, I think it is about 15% of autism cases that make such a dramatic improvement to the age of eight.
In the above study the type of intervention chosen by parents (how many hours of ABA, speech therapy etc) had no correlation with IQ improvement from Time 1 to Time 2. It is your biology that matters most and to tweak that you need a little help from chemistry, as some regular readers have discovered.
Counter Argument
There is a alternative view that IQ is not important in ensuring favorable outcomes in autism; this does sound rather odd. It is a view put forward not just by the small, but vocal, group with Asperger's promoting their "neurodiversity" ideas, but also some well paid researchers. In my chart above I used Asperger's for the black line representing the people with average IQ. In the actual paper they do not call it Asperger's.
Intelligence scores do not predict success for autistic adults
This is a very recent, rather light weight, article and would be much better if titled "Intelligence scores do not predict success for Aspies."
Aspies do indeed share some biological problems with people with severe autism, but their daily life problems are much closer to those faced by people with Schizophrenia or Bipolar. A good example is suicide, where it is extremely common in bipolar, said to be 10% (as cause of death) in schizophrenia and ten times the "normal" level in Asperger's. In severe autism the suicide rate is zero, they may have accidents but do not try to kill themselves.
In someone with Asperger's and an IQ of 120, boosting their IQ to 140 will likely not help them; it would just make them feel more different. In a ten year old with severe autism and an IQ of 50, a child who cannot figure out which way round to put on his T shirt, cannot tie his shoelaces and does not understand why you need to cut your finger nails, a boost in IQ to 80 would be transformative.
The education of people with severe autism focuses on adaptive behavior, or life skills. These are key skills for semi-independent living. These are skills that children of average IQ just pick up from observing the people around them. People with impaired cognitive function cannot just pick up these skills, they need to be taught (again and again and again). I spent three years trying to teach prepositions to my son Monty to the age of eight, using a special computer program created for other people with exactly the same difficulty. Once I started addressing cognitive function, with Bumetanide, from the age of 9, Monty figured out prepositions all by himself, without any teaching. I never even bothered to use the remaining language teaching software that I had paid $1,500 for, as a bundle, when he was four years old. It is still sitting unopened on the shelf.
As I am sure you well know Peter, conventional scientific wisdom at the moment says that boosting IQ in a significant way is thought to be impossible as the thinking is that IQ is mostly inherited and due to genetic factors.
ReplyDeleteI think you can take someone with the genetics that would produce a high IQ and effectively break them through neglect, abuse, malnutrition, disease, poisoning, or other injury and get a much lower IQ, but taking someone who is already injured and giving them a decent IQ is much harder because you are in effect trying to put Humpty Dumpty back together again and in this case the Humpty Dumpty is the human brain which is arguably the most complex organ in the known universe.
That being said, I have not given up on the Humpty Dumpty approach as difficult as it might seem or else I would not bother posting here. I also think that in the case of the blue group, at the very least you want to prevent things from getting worse as it is not yet clear at the moment if there are developmental periods for different types of autisms where interventions are most likely to succeed even though autism seems to start in utero from what the latest scientific evidence suggests. In the case of Roger Kulp, it appears that some people can make amazing strides intellectually at a relatively late age in development with the right treatment and fit into that blue group.
With respect to the blue group, one strategy is to treat autism as not just a neurodevelopmental disorder, but a neurodegenerative disorder as is the case with Alzheimer's disease.
A paper came out today which deals with Alzheimer's disease which appears to have no conflicts of interest (always important to read) suggesting Nicotanimide Riboside and an antibiotic can reduce amyloid buildup significantly by improving mitochondrial function and quality:
Press Release:
https://www.sciencedaily.com/releases/2017/12/171206132526.htm
Paper:
https://www.nature.com/articles/nature25143
This research was done in C. Elegans, but I have read about a dozen other papers concerning NR in improving mitochondrial function that I would say if you are serious about mitochondrial health, you should maybe take a break from some of the exotic herbs look at a substance which directly raises NAD+ levels in which a decline in NAD+ levels seem to be at the heart of many age-related diseases and may be part of the accelerated decline of many people with autism causing them to die much younger than the typical population.
My son has been taking NR since he was around 3 years old and he definitely still has autism but his behaviors have much improved and his sleep is getting much better as well in terms of hours slept per night (he still wakes up early but he goes to bed early as well). It is impossible to say that NR has definitely improved him because I do plenty of other interventions and he could just be improving with age, but my gut tells me things would likely be quite a bit worse without NR, as there is strong general evidence for compromised mitochondria (whether mitochondrial problems are the cause or effect of autism is tough to say right now) and poor mitochondria directly lead to all kinds of diseases, including neurodegenerative diseases like Alzheimers disease.
Very interesting post Peter!,
ReplyDeleteI could not agree more with this subject and your opinion on it, I sometimes feel that at moments when I cannot comprehend/grasp a subject I feel somewhat 'dumb' and this sense of not understanding something is what seems to make me more empathic.
Also I take the individual his/her own perspective of his/her own intelligence (mister/missus knowitall is often not very careing/giving, this is not just the case with autism/asd but also the 'normal' people).
Country roads, take me home… to my friends: How intelligence, population density, and friendship affect modern happiness.
https://www.ncbi.nlm.nih.gov/pubmed/26847844
"We propose the savanna theory of happiness, which suggests that it is not only the current consequences of a given situation but also its ancestral consequences that affect individuals' life satisfaction and explains why such influences of ancestral consequences might interact with intelligence."
"More intelligent individuals experience lower life satisfaction with more frequent socialization with friends. This study highlights the utility of incorporating evolutionary perspectives in the study of subjective well-being."
In other words, socializing is a coping mechanism for self perceived lack of intelligence?
I personally think I could go as far as saying that even things as certain food intakes reflect someones personality, it is well known for example that sugar intake represents hedonic tone in animal models.
Now take into consideration that sugar represents a short burst of energy (even as fuel for the brain!) in other words: a quick fix.
Now where craving fatty food would more likely represent long term 'thinking/analysing'.
Most of us all know that short term stress can be good, hell it can even be euphoric (novelty after all is a stressor, going out of your comfortzone and this shortterm stressor could induce learning, possibly through some hormetic mechanism), however chronic stress is damaging to the brain as we all know.
To Tyler:
Im no scientist, heck far from it, I rather think of the brain and peoples behavior as an evolutionairy mechanism for survival.
Anyways Im very confident that things that induce gene expression such as HDAC-i's are one of the only ways to permanently 're-code' someones brain/body.
After all, if the gene expression isnt working properly, how can new code be written to 'upgrade' the system, after someones goes to bed, sleep initiates, clock genes and god knows whatever complex mechanisms, try 'reset' things to the old baseline.
The trick will be to force the body out of its own baseline and create a new baseline, wether this is possible through hormetic means and/or gene induction with HDAC-i's is ofcourse very hard if not impossible to answer.
There have to be one or more 'starting' points that are the cause for autism.
Im not trying to give parents and people false hope... but it is proven with modern science that the brain even at adult age can re-strengthen itself (obviously with enough proper fuel, such as fatty acids and god knows what).
Scientists already know how to "re-code" cells using crude methods that essentially wipe the epigenetic fingerprint from cells and then "induce" them to become stem cells, from which point they can be reprogrammed with the right growth factors into a desired type of cell.
DeleteThe thinking goes that you would take some skin cells or some other cell type in your body and then induce the cells to become pluripotent stem cells, which you then coax into whatever cells you want and then graft organs using your own cells. Of course, some organs are simpler than others in terms of the numbers of cells and types. Doing the same for the brain is another matter.
So using these crude methods you can today create many different types of cells and likely many more in the near future with the aid of CRISPR/Cas9 tech, but the challenge still happens to be how do you get all of these cells to migrate to the right spots and then communicate with each other. There seems to be some progress using artificial scaffolding when it comes to working for some organ tissues, though this tech is still in its infancy and likely won't be available for anyone but the wealthiest/powerful in society when it actually becomes therapeutically useful.
The other line of thinking is to simply replace old stem cells with cleaned up new ones and dump them where they need to go and then clean out all the senescent tissue by killing it with radiation or some other method and then the new stem cells would generate fresh new mitotic cells.
This is a more practical approach, though I am not aware of anyone trying to seriously do this kind of research for autism other than some crank doctors that allegedly think that just dumping a bunch of cord blood stem cells into the brain will magically create new and useful neural tissue (you have to first clear out the old cells to make space for the new cells which is problematic when it comes to neurons), so again you are still stuck with the problem of trying to figure out how to integrate everything in a controlled way, even though the technology, as amazing as it is, exists today for you to create all kinds of types of cells including neurons.
Immunotherapy for cancer is thought to be the stepping stone for a lot of this stuff in the idea that you harvest some of the immune stem cells from the body, clean them up or even edit some of them with CRISPR/Cas9 then after artificially growing many more of them, you then reinject them back into the body or else locally to kill the cancer.
That being said, most autisms at the moment seem to have at their core a developmental insult that is not as trivial as just flipping a few genes here and there in various cell types in the brain.
Peter, I had told you that azithromycin caused a bad reaction in my son, a tic with the head from one side to the other, well it was not a bad reaction to the azith, it was the result of a strep throat,a pandas symptom.This came along with allergy,some spots spread all of his body. So, it was an unfortunate coincidence that when started to use azith he was developing a strep infection. Actualy,what he was needing, was exactly what he was taking, an antibiotic.I didn´t give time to azith to do its job. So, now I have a great doubt, as he is with bumetanide, if can give it with azith, or is safer another antibiotic. Iam afraid of bumetanide and azith interactions. Regarding bumetanide,I know is too soon, but since we started, he is calmer and happier. Valentina
ReplyDeletePeter, can IQ truly be measured in a non-speaking or minimally speaking person on the spectrum?
ReplyDeleteI say this because there is quite a bit of research on the difficulty with even "non-verbal" tests for some on the spectrum due to motor planning difficulties. These same challenges prevent many from doing as they intend when performing such actions as following directions, pointing to pictures or words, speaking...
My son, for example, was in an intensive ABA program for more than 12 years, working on early literacy and math skills. However, once we discovered his motor planning differences, he has learned to type independently, and participated in educational testing in which these motor planning differences were accounted for. My son, who outwardly performs as though he is a preschooler, scored above 120 in each educational measure. We have since met many students like my son, who appear very challenged, but understand information on a level that is age-appropriate.
I realize this is not what you are discussing with respect to IQ, but I believe that your graph only works when you are discussing the appearance of IQ trajectories, rather than actual IQ trajectories.
What do you think?
Violet
There bis a toolkit from the NIH that I think is actually called the NIH Toolkit that I posted about a while ago that answers this very question. I tried to get my school district to look into it but they said they didn't want to spend the money on the formal training for the program. Also, I think the software itself is 900 dollars or something like that which the school district didn't think was a good investment. I told them how do you know if you are making progress with my son if you can't actually measure results and they kind of just ignored my concerns.
DeleteSo the solution seems to be out there to this problem,.just it will be a tough sell to get your school to employ it unless you want to fork over the money personally.
Violet, I have no first hand experience of measuring IQ. I was told that you can indeed do it, but if you don't need to, best not to. I think it must be hard to get an accurate result. We are now at the position where my son can do his maths tests at school independently and get better grades than his NT peers, so it is clear that IQ is not a problem. Going back a few years IQ was a problem.
DeleteHi Violet,
DeleteDid you mean this study?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359559/
A very interesting comment to this paper concludes: ”Standard tests underestimate nonverbal children with autism“:
https://spectrumnews.org/opinion/standard-tests-underestimate-nonverbal-children-with-autism/
They don’t refer to motor planning issues in the paper, but it is clear from the table 2 that these children performed better in RCPM test, which seems easier for people affected with dyspraxia.
My son does not fit into any pattern in the Peter’s chart nor the table 2. Diagnosed with IQ<55 with non-verbal Leiter scale at the age of 6, he was tested with RCPM and his IQ was found to be 95 few months ago. So while some of the 40+ increase in his IQ is perhaps associated with motor planning issues and the test choice, you can clearly see that you would not expect such difference from a child who scored 0,13 percentile in Leiter’s test.
The rest is thanks to Peter’s blog and all interventions regulating chloride neuronal regulation: bumetanide, acetazolamide and potassium bromide. Any single treatment would not be enough.
Violet, can you share more about how you taught your son typing? Did you use any special technique or keyboard? I’ve focused on typing having realized the need to find means to teach my son academics according his level of cognition. He’s just started to type his first words (and this happened after KBr dose increase btw).
What is your opinion on Rapid Prompting Method mentioned in the paper commentary above?
Also, this is a scary story about typical ABA applied to a person with severe dyspraxia:
http://idoinautismland.com/?p=376
Claiming that autism is about motor planning dysfunction is perhaps as ‘controversial’ as claiming IQ boosting from moderate ID to average range with diuretics.
Has anyone looked into the 'Arrowsmith Program'?
ReplyDeleteOur child suffers from much of the same deficits that she did. The irony is that exclusion criteria for a local offering of the program is ASD.
Regards,
D&G
Peter, sorry for the confusion,you didn´t respond me anyway,may be you thougth there was something that didn´t fit.My son´s infection was viral, not bacterial,he has herpes type 2.Between all the red spots throughout his body, appeared 2 blisters with liquid on the leg near the ankle.He had the sixth desease when he was almost one.Could herpes virus have been a trigger for his autism and be latent through life? Could his pandas or tourette´s like behaviour be a result of proinflammatory citokynes caused by herpes virus type 2 or 6? Acyclovir could help?.Valentina
ReplyDeleteValentina, there is an old post about how a virus changes gene expression and therefore could affect autism. It is not an area of science that is mature, but it is plausible that as the herpes virus becomes more active at times that this would trigger behavioural changes, just like allergies do. Antivirals that limit the herpes type 2 virus should help. You would have to look into how often to use the antiviral. Since you know which virus is involved you might find some case histories of how other people with autism have been treated.
Delete