Insight Needed

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Hi Everyone, my almost 5 year old has been in EI since he was two for his speech delay. His speech is significantly better and he continues to progress but he's still obviously behind the norm. Everyone- his preschool teachers, his original speech therapists, play therapists- always kinda give me the same thought.... "Well I see signs of autism but there are definitely contradictory characteristics". Honestly I think I'm going to lose my mind soon. The past 3 years have been pure hell. Hell because no one can give me an answer. He just had his 2nd child psychology meeting yesterday and I'm awaiting an email from the Dr giving me her thoughts. Meeting 1 was with all of us and yesterday was a play session between the two of them. Her initial reaction was "If it is, it's def high functioning". So here is what I see.

Sleeping- I've had his bedtime routine nailed down since he was under a year old. He sleeps a solid 9 hours every night. Occasionally he'll wake up super early but when that happens he goes downstairs for something to eat and comes into our bed and pokes me awake to put cartoons on and he's content eating whatever it is he found until the sun comes up.

Tantrums- normal. Worst trigger was the stupid Ipad when it was time to turn it off. I took that away and he hasn't used it for about 2 months. I hate it and he's stopped asking for it.

Humor- I taught him "Guess what? Chicken butt" and he thought it was the greatest thing ever (the school is going to hate me but whatever.....he laughed at a joke)

Play- his play has gotten a lot better....meaning he's using the toy for its intended purpose. He doesn't have a toy/object that he's fanatical about. He does organize/line them up but he won't freak out if you mess it up...actually he kinda glares at you like, "Hey ahole, you really just did that".

Transitioning from activity to activity (as observed by psychologist)- during the meeting he was playing with Legos. She interrupted him to play with the Dry Erase board then quickly sent him to the sand table THEN was like, "oh look at all of these built Legos". Completely fine.

People other than family- he loves people. We go to amusement parks (he wants to ride everything), carnivals, his dad takes him to the high school football games and he gives everyone handshakes, he's a flirt and always finds the cute girls to follow around, he says Hi to strangers, and he salutes military, policemen, and fireman.

Hand Flapping- this has decreased significantly but when he did do it it was always when he was excited. His play therapist always made note that he did it for a purpose rather than subconsciously. He does rock when he's tired.

Randoms- so the little turd is smart. Letter/number recognition since he was 2, we read ALL the time and he's starting to spell short words, he does grown up puzzles with about 50 pieces, makes up songs in the shower. He doesn't have aversions to tags, sticky things, sand, etc. He loves music...is fine with crowds....he is not athletic, lol, poor kid is pretty clumsy.

Routine- I keep a pretty strict routine during the week but that's for my sanity as much as his. The weekends get switched up and he's pretty good up until dinnertime when he starts getting tired...then he's crankier but I think that's pretty typical.

Potty training- i hate it. He is not trained yet. He's fully capable of going and does sometimes without being asked but as a general rule, he doesn't. He doesn't care if he's soiled. I've tried m&ms. stickers, cookies, etc....all work for a bit but then he gets bored and the magic is lost. I've switched to the most generic uncomfortable pull ups imaginable and he's still the same.

Speech- I saved the "best" for last. Echolalia is still pretty rampant. I can point to anything and ask "What color" and he'll answer right away. If I ask "what is your fav color?", nothing. Subjective questions do not work with him. If I'm giving him 3 options I'll ask him a few times changing the order of the options and I'll get a different answer usually each time. It's usually the last option. He is not good with comprehension. We read a particular Elmo book every night....he has the entire thing memorized. I read one page then he reads the next. After his page is done he says, "your turn". If I ask him, "What is Elmo doing in the story" he won't answer "flying a kite". He still babbles when he's excited...it's almost like his brain is working fast than his mouth and everything comes out jumbled because once he stops taking he looks at you waiting for a response. HE knows what he's trying to say. He's fine with receptive language.

Autism, tourettes, and apraxia have all been mentioned to me. In closing he's a happy, inviting, funny, loving little boy. He's not hard to handle, actually he's pretty mellow. He has a pretty bad language delay but as I said he's continuing to progress but there is just something about him. Something in his brain isn't clicking the way it should be. Doctors are, as I'm finding out, kinda useless. I ask questions and they regurgitate checklists and paragraphs from the AAP website. It's impossible to hire a private speech therapist....he's on one waiting list and he's #120. The cost of that is insane anyway. He does get SP in his preschool so that's at least something. I wanted more since he'll be starting kindergarten next year but I also don't want to intentionally diagnosis him with something JUST to get healthcare benefits. I'm probably dumb for doing that because I think everyone does it but this is his life, his future and I want the truth. That of course may change when I have to get a 2nd mortgage on my house.......


Any way...this is really long now so probably no one will read it. Does anyone have any first hand insight they can share with me? I've gone from "yes he is" to "no he's not" soooo many times as far as him being autistic. I know no one is the same but there are always staple characteristics that he just doesn't fit into. This entire ordeal has made me crazy and I'm on the verge of tears every minute I'm awake because I just feel lost and alone.

Thanks-Lisa

What do your instincts tell you? Read articles and read around this board and think about how the descriptions and issues sit.

But mostly, remember that labels are only good for what they can get you, so maybe at this point in time you don't really need one. That may well change over the next two years, but I wouldn't worry so much about the word used to describe your son as making sure you feel you have the tools to help him thrive.

To that end, I would recommend trying out the protocols developed here for ASD children. If your child does better under those protocols, you can probably assume he is either broader autistic phenotype or ASD. If the protocols don't help at all, then ASD may be the wrong place to look for answers.

My son was diagnosed at 7. Until the school principal mentioned the possibility of ASD, it had never occurred to me that might be it. This was 15 years ago; a lot of knowledge and understanding has developed since then. Once I did my homework, however, the label seemed to hold a lot of answers for us. The physiologist evaluation confirmed it.

I don't know if it would have even been possible to diagnose my high functioning son at an earlier age. I doubt it would have been. If he hadn't had disgraphia we might never have pressed for a label. I am glad we did for it handed us a lot of keys, and while I have regrets on many things in the early years that could have been helped by knowing, I also think there were benefits to not knowing. It kept me focusing on the unique individual, and not a label.

I would give him a year or two and see how the transition to more formal schooling goes. If you have a district with a good understanding of ASD (which sadly is still hit and miss), they will be able to help your family find the right solutions. Meanwhile, work with him on the assumption he is ASD and see how that changes things. Let him be who he is and allow that to lead you.

Doctors don't get enough time with patients to be the experts you expect them to be. I'm an expert on a lot of things because spend tons of time studying stuff. I'm out in the yard almost every evening working on my garden during the growing season. If I see something unusual I'll look it up.

(1) Are you in a bilingual family? It is well-known that children from bilingual families typically exhibit speech delay.

(2) Verbal and social aspects are not good markers for autism. Autism has one very specific characteristic: special interests. If a child exhibit peculiar/special interests, it is autism. If the child doesn't exhibit peculiar/special interests, it is not autism.

http://wrongplanet.net/forums/viewtopic.php?t=368385

I agree to DW_a_mom, labels are only as good as they can help.
If tips for handling autistic children help with your child, use them. If not, don't. Autism is a pretty broad and multi-dimensional spectrum and every individual in it is first of all an individual. The goal is to help your child overcome their difficulties well enough to go on and to build on their strengths. If a label helps, great, if it doesn't, don't bother.

Cheers!

My 5 year old grandson just got diagnosed about a month ago. I have known for a very long time. My daughter and son in law were deeply in denial, but after a horrifying incident in Kindergarten where he bit, hit and kicked a teachers aide, I insisted on bringing him to a specialty clinic called Fraser for an eval, and since it was such a crisis situation they were able to get him in quickly. My advice is, seek out a place where autism is their specialty and have him tested. Since it is their specialty, they see autism in many forms every day and know what is and is not autism.

I really don't want to keep challenging things you write, because I do value your perspective, but I disagree with how strongly you link special interests to ASD. The universal element is more about failing to accurately perceive signals from others than it is about special interests. ASD is a brain wiring difference; things like special interests are just external markers. But nothing in the brain wiring is going to force that marker to exist. Sure, special interests are extremely common, but failing to have a special interest does not means ASD can't be there.

You can go with other people's definition. If you look at Leonard Susskind, or Richard Feynman, you wouldn't describe them as autistic. They are social, outgoing, verbal. The fact is, the social-verbal aspects are highly variable. If a child is raised properly, they can be social and verbal. Sensory issues? Not a good parameter either.

The reason I provided the link is, to me, there is no mystery in the nature of autism: it's simply a renormalization phenomenon inside the human brain. I have my own definition of autism: "unmitigated auto-feedback due to an overly connected brain." I have never changed that definition. DSM has changed its definition. I have not.

I've recently learned that a rare genetic disorder: MSUD (Maple Syrup Urine Disorder) can also lead to autism. Given the dozens to hundreds of gene mutations that can all lead to autism, it is extremely hard to argue that autism is not a renormalization phenomenon. Renormalization of the brain basically means that nearby neurons are so tightly bound, that the unit of interaction inside the brain is no longer a single neuron, but a cluster of neurons. That leads to the dewdrop model of the brain: there are bigger dewdrops. Now, the slope of the leaf (or the adhesive force) varies from person to person, so, for people like Feynman or Susskind, or my daughter to a slightly lesser degree, they are social and verbal. BUT, the giant dewdrops are still there. If those dewdrops are not connected to the negative centers or if the person has learned to handle it, there won't be sensory issues, either. So, what are you left as the only possible manifestation of autism? The giant dewdrops are there. The only thing left is the ability/tendency to dwell on thinking on specific topics, endlessly. Perhaps "special interests" are not the right words, but close enough. The ability/tendency to dwell on thinking on specific topics without stopping, that, is the fundamental characteristic of autism. It's the presence of the auto-feedback loops (the giant dewdrops) what defines autism. Nothing else really counts.

Anyone on the spectrum that puts that characteristic to proper use, becomes a genius. Anyone that is not developed to take advantage of it, becomes a comatose adult. That is why I never differentiate between high-functioning and low-functioning. The only distinction between the two groups, is whether the children are properly developed or not. Of course, you can leave it to Mother Nature: she operates statistically and selects a few to be geniuses, and the rest are simply "cost of operation" or "collateral damage." My whole point is that we can do better, and not rely on Mother Nature's chaos theory approach to select who becomes a genius. My wife always tells me: maybe Mother Nature is right and we shouldn't interfere: if all autistic children are properly developed, what's gonna be left for neurotypical people (like herself) to do? How can neurotypical people ever compete in a world full of smart autistic people? I have a more cynical view: we are the last few generations of human beings. Humans are but a step in evolution. Like my paleontology friend used to tell me: the destiny of all species is extinction. Our job is simply to pass along the baton.

Can you expand on what you mean by referring to negative centers? Thanks!

Oh, those are places like basolateral amygdala inside the brain. I mentioned it about four years ago: https://wrongplanet.net/forums/viewtopic.php?t=293342

https://en.wikipedia.org/wiki/Basolateral_amygdala
... The primary function of the basolateral complex is stimulating fear response.

Autism is all about auto-feedback loops inside the brain. If you know about the LC circuit (used for generating carrier signals in radio equipment, like in the Armstrong oscillator: https://en.wikipedia.org/wiki/Armstrong_oscillator), you know that a pure sinusoidal wave is a Dirac delta in the spectrum space (Fourier Transform). That means it is excruciatingly painful, when this part of circuit is connected to your negative center (e.g. basolateral amydala). A bit like listening to a loudspeaker that is too close to a microphone. Theoretically the peak spectral value of a Dirac delta is infinite. What can you do to reduce the peak spectral value (and hence reduce the pain)? You use modulation. You connect the LC circuit to a low-frequency signal, so you tweak the pure sinusoidal ever so slightly. Here is an example situation of the spectrum: you can see the Dirac delta (carrier signal) to the right is broadened into a lump after modulation.



Of course there are also positive centers inside the brain. An example is the nucleus accumbens. When the dewdrops (Dirac deltas, auto-feedback loops, whatever you call them) are connected to the positive centers, you get things like stimming behavior, hyperfocus, etc.

If you understand the modulation step, you'll know how to solve all issues related to autism. It's all about modulation. Elementary, my dear Watson. Autism is one and only one single problem, solvable by using one and only one single tool: modulation. You use modulation to connect different parts of children's brains. And with that, these children develop well, and all their sensory and negative issues disappear, including tantrums and anxiety issues. You open wormhole-tunnel connections inside the brain, so the energy of neural processes can flow to other parts inside the brain. If you understand that, autism can be understood and solved in 5 minutes. Frankly, autism nowadays to me is a boring topic. Too trivial. There are more interesting problems out there to solve.