Sometimes these things can turn up out of the blue, and sometimes you can trace them. With our family, I reckon I can trace similarities on both sides of the family tree, back a couple of generations. Not necessarily anything diagnosed as a problem, but the odd family member, the talented but weird ones, the genius eccentrics.
difficult child 3 is still losing baby teeth, at almost 14. He's small but suddenly growing in the last few months.
With your son's diagnosis, I'm thinking you may be suffering from what I call Blind Men and Elephant Syndrome - where each specialist only looks at the bit within his/her specialisation, and ignores the rest, so you get a patchwork diagnosis list instead of having someone look at him overall and connect the dots. You do know the story of the blind men and the elephant? a group of blind men encounter an elephant for the first time and depending on which part of the elephant they encounter, they each draw very different conclusions on what an elephant is like; each is getting it wrong, and yet collectively they could be so very right.
We can't diagnose here, so please be aware that what follows is only the opinion of a lay person.
The IQ test - can you get hold of the complete test results? The sub-scores? I think it could tell you a great deal.
If your son's IQ scores are about that level across the range of sub-scores, then I doubt Asperger's is a likely diagnosis.
But given what you say about your son, especially the non-verbal learning disorder, there could be a lot more going on and some clues in that test which perhaps another expert should look over, especially taking the NonVerbal Learning Disorder (NVLD) into account as they do so.
Society's use of IQ tests have gone way beyond the original intention and purpose. I think even gone beyond appropriate and valid use, and certainly given far more weight than is perhaps correct or appropriate. We forget their original purpose and how they have been constructed.
The purpose of IQ tests originally was to examine a spectrum of children and determine where each of them came on that spectrum; the ones near the top were to be slated for extension classes, told they were bright and supported into a high-powered career while the lower-scoring ones had expectations reduced and destined for more hands-on careers. it has since been found that children will achieve better when put in situations where they are told they are bright and capable; when children are put in situations where they are told they can't achieve beyond a certain level, that is what you will get.
Original IQ tests were developed for a specific group - white kids, middle class at least, US-raised for preference, functioning normally and educated in mainstream with age-equivalent peers.
With every step away from this that you take, you decrease the validity of any test results (whether high results or low ones).
The testing is comprised of a number of smaller tests, each dealing with a particular area of capability. The test is administered according to very strict guidelines with scoring also done according to strict guidelines. The belief is that a person's IQ does not change through their life. We know that now to be incorrect.
We tend to equate IQ score with intelligence. Increasingly, we realise this is inaccurate.
The scale is not linear. If you go further than about 20-30 points away from the centre line (100) you lose accuracy.
difficult child 3 and difficult child 1 both 'failed' their first IQ tests. For difficult child 3, his language delay prevented him from properly recognising the questions; plus he had no concept of the validity of the test and was not necessarily motivated to cooperate; if he found a part of the test that interested him, he wanted to continue (such as playing with the blocks). he didn't always want to make a pattern as requested, if he thought of something else to do instead.
difficult child 1 on the other hand WAS motivated to cooperate, but was feeling so anxious that he couldn't sit still; he was fidgeting so badly that the tester stopped the test, but scored it as if he had completed it. In both cases, the testing time allowed was only about an hour.
In contrast, easy child 2/difficult child 2 was tested at age 4 (same age that difficult child 3 was tested) and her testing was done over several sessions. her sub-score tests ranged considerably but were all high. She scored 17 in some sub-tests and her lowest (at age 4) was about 12. That is equivalent to IQ scores of 170, and 120 respectively. A big span and one which, with hindsight, should have set off alarm bells.
The type of test changes as they get older - when she was tested a few years later, another couple of tests were now included for a child who was reading and writing. Her lowest score was 6. Again, her highest score was still 17.
In most tests, especially where the sub-scores are similar enough, they are averaged out to give you a final number. Where there is a significant gap in sub-scores, especially between verbal/non-verbal scores, the instructions say to NOT average them out, but to present the results separately.
Too often, this instruction is ignored. Education systems especially seem to do this. This is what happened with both my boys' first tests. In averaging out really high and really low scores, the outcome can be tragic - gifts are ignored, but also deficits can disappear in the confusion and the child present as "normal IQ" instead of a bright but learning disabled child desperately needing help.
Both boys have been tested again some years later and scored way above average.
So try to get your hands on those sub-score results then sit with a psychologist and try to work out a program to help your child in those areas where he scored lowest. Ignore the numbers - I suspect they are meaningless. Just try to find some reason for the low score.
For example, if your child was deaf and you didn't know it, and you have the child IQ tested but the child simply couldn't hear well enough to answer the questions, the child could have been diagnosed as "retarded" (to use a now outdated terminology). Or if the child is dyslexic, but the test is given entirely as a written test - same problem. The original questions etc were not developed with learning-difficulty kids or handicapped kids in the mix. They would have been screened out, probably pre-labelled as 'unfit' and the test based on 'normal' kids, not ones who clearly couldn't function. There used to be a lot more institutions back then.
Now leaving the question of IQ, I give you an example of "blind men and the elephant".
My sister is an intelligent woman. After her second child she noticed certain symptoms. She had felt them mildly for some years; now they seemed much worse. She had shaky hands, a very fine tremor when she held her hands out. She couldn't do any fine work. She was hating hot weather, even wearing summer clothing in cool weather because she always felt 'hot'. She was really anxious, very nervy, irritable and touchy. She couldn't sit still, always felt she had to rush here or there, and yet felt so exhausted so quickly. But she couldn't sleep, either. She was increasingly feeling a sense of dread, as if something bad was going to happen but she didn't know what. She was having trouble swallowing, feeling like she was choking. Her hair was falling out; not in patches, but generally thinning.
She went to the doctor and described it all. The doctor's reaction - nerves. Maybe some post-natal depression. And anxiety. The choking feeling - he put that down to her being rushed, with her young family and not taking the time to chew her food. She tried to explain that even a glass of water felt 'lumpy' but he ignored her. he sent her away with a prescription for valium, a referral to a psychiatrist, some conditioner for her hair and encouragement to relax a little more.
Even when my sister asked, "Do you think this could by an over-active thyroid?" the doctor laughed at her, told her to stop trying to diagnose herself and leave it to the experts. Instead, he chose to find about three different things wrong when really, ONE thing explained it all. He refused to do blood tests.
Some years later, my sister was correctly diagnosed and had about 90% of her thyroid removed (leaving a normal size) - it had grown inwards many times larger than it should have been and was threatening to block her air supply.
These days doctors are encouraged to learn about Occam's Razor, which basically states that when there are multiple possible explanations, the simplest one is the most likely.
I think, where your son is concerned, you mind is automatically switching into "Occam's Razor" mode and trying to find one explanation instead of the many.
You may be right. But you need experts to assess him properly, to look at evidence already gathered and perhaps do more tests where things were left incomplete. A multidisciplinary team would be great - they all get their heads together and talk to each other, which I suspect did not happen in your son's case - but even having one really good, all-round specialist who will look at ALL reports and gauge them carefully, would be better.
IN the meantime - what do YOU think? Where do YOU think he needs support? Work on that, deal with what your own instincts tell you and be prepared to moderate your own approach in the light of more expert information when it comes to light.
But trust your own instincts. Especially since you're home-schooling him, you already have some very good ideas.
Marg