Another Newly Diagnosed story

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So my son is 3 and 3 mos. We had an IEP meeting with a school district diagnosing him with Autism. The Autism report states that he is Average (parent) and Slightly elevated (teacher) on the total scores. He is verbal, but can't seem to have a conversation. He does use full sentences up to 5 words sometimes, has good joint attention (at home), plays normally with his toys, older NT brother who is 5 and has really no behavior or sensory issues. He understands 1 step instructions, makes good eye contact. BUT in every one of these things, it's totally opposite at preschool. The psychologist observed him there for 30 minutes and found he was totally in his own world, in his "own bubble" and whatever communication he did was on his "own terms".

I guess I just wanted a sense of how others might have received this diagnosis. --- thx.

Last edited by DT154 on 16 Dec 2016, 9:47 pm, edited 2 times in total.

You have pretty much described my own son at this age. He is 6 now and although his speech is sometimes unclear he has a very broad vocabulary and can construct complex sentences. He is also very social with his peers. It has taken ALOT of intense therapy (ABA) to get him to this point though, but the pay off has been huge. So it's been very worth it.

I also want to mention, when my son is sensory overloaded, he doesn't scream, hit out or self harm like many kids do but he goes into, as you say his own bubble. its almost like a catatonic state. This is his coping mechanism.

Sorry, I was kind of in a hurry when I posted. They did do a battery of tests on him. His main strengths were in articulation of speech, labeling objects, cognitive problem-solving and some joint attention. His weaknesses included just about everything else.

Yes I've seen him zone out a couple times. I'm not sitting in denial here. We are on a new journey, and I hope this forum will be useful for me as we get started on it.

I'm sorry, I wasn't at all insinuating you're in denial.

You're right, it is indeed a journey. 2 years post diagnosis and for us it still a very windy one. I'm not sure that will change. Parenting is a tough enough road as it is without throwing ASD into the mix!

I'm new to the forum too, so far I've found people here to be very helpful. I hope you find the same.

thanks. I wasn't implying you were insinuating. I just thought my OP read like I was in denial, that's what I meant.

Woh. That is tough! One thing that is really important in young child studies is going into the home, or at least polling the parents.

OK. So, he's three. And it doesn't sound like he's behind at all at home, but he isn't up to speed at school.

Here's the thing, all that school is going to do is give him extra attention and special services. I'm not sure I would object if I where the parent. Why object to extra attention for your child?

But it also seems like you have a case of a shy 3 year old who isn't showing his stuff out of the home environment. Which isn't really all that off for 3. They really can't be reasoned with at that age. And a LOT of 3 year olds take months before they decide to talk at school. I worked in the pre-school unit and observed it with my own eyes. Kids would not talk all day. Their parents would come in, and the kid would walk right up to them and whisper in their ear. And I was like "I didn't know that kid could talk!"

I suggest investigating two things. First off, is there something in the school environment that is making him uncomfortable? You can't just assume that there is anything wrong, but it's still worth checking it out. Hopefully, everything is fine and he's just not comfortable at school.

Secondly, just continue to make sure that those interventions are comfortable for him. Don't let them do anything that is upsetting or stressful for him. Don't let them talk you into high intensity intervention or 100% compliance programs.

Honestly, please don't get attached to the autism diagnosis. Cases like this are why young children are often given "developmental delay" diagnosis at first. There's just too much wiggle room developmentally. Except in extreme cases, it's really hard to make the call this young.

Sometimes I feel so frustrated that our school system and the entire psychology field just don't understand these children, at all. It seems like it'll take another 20 years for them to catch up. Meanwhile, millions of children's lives will continue to perish at the hands of these "experts."

It is well-known that these children are visual. Countless studies have shown that. Recently I was at a neuroscience conference where a doctor showed the alpha-wave measurement, and again, only the visual cortex part showed consistent synchronization peaks.

Yet nobody tests on the visual skills of these children. We still live in a world that takes neurotypical behavior and milestones as the gold standard. People still view autism as a medical issue. So it's all about "therapy": how to fix these kids, so that they can become "normal." In short, it's all about how to "change" these children.

That's racism, pure and simple. We don't apply the verb "to change" to neurotypical children. So why should we apply this verb to the children on the spectrum?

Even in this forum, from parents that claim themselves to be autistic, even when they are fighting for equality for their children, they still view themselves as suffereing from shortcomings, they still hold neurotypical folks as the ideal standard. I don't get it. Why the inferiority complex?

No one talks about how to develop these children from their strengths, how to develop these children from their passions.

And it seems like I am the only parent here that has never complained about how hard it is to raise autistic children. I really scratch my head. It has been fun all along for us. Myself and my wife have told each other countless times: "this is heaven." Our children are always happy and smiling. One teacher even told me, she has been teaching over 20 years and has never encountered children that are this truly happy. My wife always tell me, if she had a choice, she would still choose to raise autistic children. She is neurotypical.

All I see in this forum is people commiserating each other. Telling each other how hard their life is as parents.

Meanwhile, even just yesterday, I still took my son to elevator rides. His interests have expanded explosively lately. Even his 1st grade teacher has been able to see my son's progress in these few months of school. I don't pay attention to my son's social aspects, not even verbal aspects. All I care is whether he is showing imagination and creativity. Trust me, in this Robotic Era, where machines are replacing humans at workplace, creativity is everything.

I don't understand. Don't people watch DieselDucy's elevator channel, at all? Look at the guy, so energetic. Running with autistic children in elevator rides. From elevators my son has learned to talk, to write, to draw pictures, to assemble electronic circuits, to do math, to initiate conversation with strangers. Basically, every single skill that he'll ever need in his life.

My children has had everything that people see as "problems" or "symptoms" of autism. You name it, ADHD, tantrums, stims, sensory problems, rigidity, no eye contact, speech delay, lack of socialization. While the "experts" look at all these things as shortcomings/problems, to me, they only reflect children being children. I seriously fail to see any problem in autistic children, and I have personally met a fairly large number of them. On the other hand, I look the adults in our society and I see them full of issues. "Inability to learn" being the most severe and most widespread problem. It's always funny to me that we label these children as suffering from learning disability and behavioral problems, without looking ourselves in the mirror first. Everyday I find more and more parents that themselves are under medication. Good grief. Our society invents a problem that doesn't even exist, and then makes everybody suffer from this invention. I guess masochism is the right word.

Why chase after making our children neurotypical? I don't understand. There is another way of raising these kids. They should start to learn to read by 9 month old, already. They should be communicated through their eyes, not their ears. They should learn to produce their manual output (building block toys or picture drawing) early on. There is zero need to develop their social skills when they are young. There is zero need to force them to potty train. Verbal skills can wait, too. Parents should not solve tantrum/anxiety issues when these kids are sad/mad, but rather when these kids are happy and smiling. Parent should catch these children's interests and expand from there. For instance, my son recently showed interests in Venus flytraps. So my wife search and bought story books related to Venus flytraps. We have countless types of buliding block toys. I don't understand. What's so hard to do all this? What's so hard to draw pictures for your children or make animation video clips for your children? Why is my family so happy, while all other families are whining and suffering? I don't understand. Why view autism as a shortcoming, as a problem? Why try to change these children? Why even bother to apply the verb "to change," when we don't apply this verb on neurotypical children? Why the discrimination? Why the inferiority complex? I don't get it.

Recently met another mom in an event. She kept apologizing that her daughter was into boyish toys like Hot Wheels. I asked her whether her daughter liked elevators, and she said yes. She also said her daughter liked to sing in the middle of the night. Not different from my daughter when she was young. The mom also apologized that her daughter would do certain things over and over again. And then the mom became sad and said she knew her daughter would never be able to become independent. I mean, I see so many red flags from the side of the adult(s). Just about everything I would get excited about her daughter, she saw it as "abnormal." So of course the child became underdeveloped, because no one developed her daughter from her passions, her interests. Self-fulfilling prophecy. The mom just kept saying, when she took her daughter to diagnosis and confirmed autism, she told herself: "that explained a lot." Good grief. Sure, label your child with a mental disorder, and now you are free from your parental duties. The child doesn't develop, no problem, it's because the child is ill and cannot be developed. Meanwhile, I don't see anyone do a damn thing to develop these children in the visual-manual direction. Not parents, not ABA therapists, not schools. Parents get embarrassed even just taking their kids for elevator rides. Parents apologize for their little girls playing with Hot Wheels. Parents spending entire days trying to figure out: "how do I stop my children from doing this and doing that?" instead of actually expanding the interests and skill sets of their children, from their children's passions. That's how our society have turned millions of the best brains into comatose adults.

Jason, I don't know why I continue to be surprised at the hubris and inaccuracy of your posts.

You are constantly making assumptions of what other people do and do not do, based on posts here, when you have insufficient information.

No one on here (even you, Jason) is posting about the entirety of our lives. Just because you are the only one constantly bragging, doesn't mean you are the only one with things to brag about.

You complain that this sub board consists mainly of people posting problems and commiserating with each other. Even that is incorrect b/c there are a lot of constructive suggestions made, as well, (even by you, sometimes, which might actually be listened to, if they were not buried in insults and braggadocio.)

You also make a lot of false assumptions about how similar autistic children are from each other. Why would we all be watching some show about elevators? Not all of our kids have a special interest in that.

Most people are just not going to come on here and post successes (unless they are recent, hard won and someone gets the impetus to share)

You are correct that parents, teachers and caregivers should be developing strengths. Tony Atwood has been saying this for ages as well as many other people. Even my rinky-dink school district (with no STEAM program!! !! !) had that as part of the IEP process. This is not new.

Could you make a constructive argument that schools should be encouraging it further in practice than they do? Sure. Should you be assuming the parents on here are not doing that? No.

People, by nature, are going to want support and commiseration. People who are not burdened with arrogance will also want help with issues they have. You don't want any of that, and you think there is too much of this on this board. You should be used to the tone of this board by now.

As far as bringing in issues you run into outside of the board. OK. Some people care about gender norms and fitting in more than you do and more than I do, but it is the propaganda our culture promotes, and it is hard even for autistic/BAP/autistic adjacent people to feel the pressure of it. People want their kids to be happy and they are afraid that if they don't they will be unhappy either b/c they are missing something (NTs are more apt to believe this perhaps) or will be bullied (a fact of life for many of us growing up)

Me, personally, I don't give a rat's patootie about that b/c I pulled my son out of public school. If I did not, I would have to worry about it b/c kids can be vicious. Other people may think fitting in is fun, and they need explanation as to how it might not be for some percentage of autistic children. (Some care or care for portions of time like JHS or HS) People needing information is why they come here. If you are antagonistic to people's questions, what do you think you will accomplish? Blunt is one thing (a characteristic of this board I admit I partake in probably too much) but being philosophically being opposed to it makes no sense.

You are not going to turn this into a board where everyone just brags about their kids and/or asks you for help on developing their kids strengths, and where you are venerated as an expert on the basis of not wanting anyone else's advice. If you want that, you are probably going to have to create your own forum somewhere.

And WE'RE NOT ALL VISUAL. ARRRRRGGGGG!! !! !!

I mean, really! I often identify people who are potentially struggling with mental illness and or autisticly rigid thinking, and it usually amuses me rather than annoys me. But this guy gets on my last nerve. I think it's because he's steriotyping us all as being the same as his kid. And we're not the same as his kid. We are all different. We are individuals.

I will say one thing, and that thing usually keeps me from ranting back at him. It does seem like he loves his son, sees his son for his strengths, and does well by him.

Now, if we could only convince him to treat other autistics with the same respect, we would be somewhere.

We are. ALL. At younger age. That's where we differ in opinion. I have explained countless times about universality, about renormalization. The fact that you are unable/unwilling to understand it is another matter. I have even included the example of "Central Limit Theorem" for those that have taken any decent course in statistics. I know renormalization is a very technical subject, you typically won't understand it unless you have a PhD in physics/chemistry or related fields, or unless you are patient enough to look it up in Wikipedia, but the "Central Limit Theorem" should be accessible to a wider audience. Sure, if you have never taken a formal course in statistics, you still won't know what I am talking about. The autistic brain is a renormalized brain. Period. Renormalization/universality is probably the *ONLY* possible explanation why autism can be caused by hundreds of completely different gene mutations. It explains why fragile X can lead autism, and why some people have epilepsy while the majority don't. Autism is not a monogenetic condition. It's a super-heterogenetic condition. Unless you accept that there is a renormalization/universality phenomenon at work, you won't be able to explain why autism can be triggered by so many different root causes.

That's where most people fail. And that why my kids do well and others don't. Let me explain.

You surely have seen the video of my son reading and dooling. Here it is again.


Look at how focused and calm my son is in the video. That's what he does everyday: read books, draw pictures, write down words and sentences. My question to you is: where do you think that he got the fondness for drawing pictures from? Where did the get the fondness for reading books from? Why he has such a positive attitude towards reading, writing, drawing, whereas other kids on the spectrum have such a hard time (non-visual, according to you)?

Could it be because when he was 2 years old I already was making video clips for him? My video clips are always fun. From there, I taught him to look at my static hand drawings, I taught him to read. Before he was 3 years old, he was reading books. (Nope, he is not hyperlexic, you can see from his handwriting that he is in no way hyperlexic: he misspells all the time. I know very well about hyperlexia, because my daughter is hyperlexic.) Yeap, my son has very fond memory about reading and about stick-figure drawings, precisely because that was the way how I communicated with him, since his young age. I seeded in my son (as well as my daughter), the very foundation/root for the development of their future skills. It all started from the development of their visual capabilities, which what ALL autistic children excel at, at young age. While other parents were searching frantically for miracle cures, I seeded in my children the very primordial root for their future development. I did that because I knew autistic people are visual, because I knew myself was visual. Because Temple Grandin has a book titled "Thinking in Pictures" which reflected my personal experience. So, my kids got a solid foundation, whereas most other kids on the spectrum did not have a chance to be seeded in that direction. Yeah, other parents did not see any need to teach their children to read at early age, other parents did not believe that it is necessary to draw pictures or make animation video clips for their children.

Fastfoward 5 years. Those parents that have refused to teach their children to read early on, those parents that did not draw pictures for their children, are struggling today with a plethora of issues. For instance, one thread here just mentioned about how their children are stuck with computer games that are ruining the family relationship. My son has so many daily activities that he enjoys. He can read books, he has tons of building block toys he can play with, he can assemble electronic circuits, he can doodle or write, he can watch YouTube (lately he is into Zack King's magic trick videos). He likes to go check out the laundry and dryer machines, lately, too. I am teaching him some math, and he would prepare his own problem sets and test them out on my wife, ha ha. Sometimes he shoots video clips, he has done his own video clips to teach his 2-year-old baby cousin to read. He plays pretend-elevators and hotels with ABA therapists. On weekend I take him to elevator rides. He has a large variety of interests and activities he can do nowadays. He is not stuck with just video games, like so many other kids on the spectrum. Sure, he does play games, but he can entertain himself with so many other activities. Tell me, for those parents that say their children are not visual and hence refuse to develop their children in the visual-manual direction when their children were young, what have they gained? They have gained nothing, except making their own lives miserable 5 years later, stuck with their children's hyperactivity, stuck with their children's limited set of interests. It's their own making, their own choice. Meanwhile, my children are happy and smiling, and we the parents keep telling each other: "this is heaven."

Take another look at the Connected Development Graph


Take another look at the analogy between autistic brain and dew drop on a leaf (image from Wikipedia)


Each dew drop carries the energy for growing a tree, a network of brain connections, inside the autistic brain. What I did is I started to grow a gigantic tree/network inside the brains of my children, and the starting point is precisely from their visual memory experiences. I took advantage of the largest dew drop inside their brains, and grew a gigantic tree (connected development graph) from there.

The autistic brain is not like the neurotypical brain. The neurotypical brain is "unrenormalized": it is like a leaf with a very thin layer of mist, very fine droplets covering the whole leaf. Sure, neurotypical people can more easily be communicated from all channels. But the drawback is each one of those very fine droplets has only a small pocket of energy. They won't be able to think as deeply as autistic people, their experiences are scattered and not as fully connected as the autistic brain. So, autistic people tend to be able to see things (correlations) that neurotypical people cannot see, and autistic people can solve problems that neurotypical people cannot solve.

OK, coming back to the autistic brain. When you have refused to develop your children by using the largest dew drop on the leaf, good luck. Most of the other spots on the leaf are dry and don't have any droplets. No energy for you to grow any connection. Impossible to grow trees/networks out of them. If you are lucky you may hit one of those smaller or medium size droplets. But guess what? The trees you will grow from those mid-size or smaller-size droplets can never compare with the tree that you can grow from the largest dew drop.

By refusing to develop their children early on from the visual-manual direction, parents have asked themselves for endless list of troubles down the timeline. It's a parent's choice. As I say, you snooze, you lose. No need to cry later. No need to complain why life is so hard. Parents make decisions, parents live with the consequences. I can only scratch my head on why they make the choices they make. Masochism is the only explanation.

Different children do have different preferences in the visual direction. For my daughter, I drew pictures and that was enough. For my son, I had to make video clips instead. My daughter likes to draw pictures early, my son instead started with building blocks and watching elevator videos. On the surface, I developed my daughter very differently from my son. But deep down I see everything I do as the same. No matter whether is about teaching my children new skills, or solving their tantrums issues, or sensory issues, etc. I have one and only one tool: modulation. It's like a Swiss Army knife. With one single tool, I have solved every single issue. You guys get confused by my words. You guys get confused by the so many faces of autism. Yet to me, autism is one single problem with one single solution. Whenever I say that, you guys get confused. You guys think that I am telling everyone to take their children to elevator rides. Ha ha. I don't take my daughter to elevator rides. Get it? You guys need to handle each autism issue separately, but I see all of them as the same. And I see all my solutions as the same. I do things differently for my daughter and my son. To you guys, you don't understand at all what I mean by "the same, yet different." You think I am being elusive and playing with words. Guys, take a look at Grand Unified Theory https://en.wikipedia.org/wiki/Grand_Unified_Theory or Theory of Everything https://en.wikipedia.org/wiki/Theory_of_everything, and try to understand how I see the symmetry behind it all, the beauty of autism, whereas you guys are stuck in the story of the Blindmen and the Elephant https://en.wikipedia.org/wiki/Blind_men_and_an_elephant. You guys don't see the forest because of the trees. You guys need dozens of hundreds of approaches/solutions to deal with all the problems of autism. I have one and only one tool. I see simplicity. You see complexity. That's OK. One day people will understand me. It may take decades, but they'll understand me.

We have talked to him many times about how disrespectful he comes off, but he either does not care or does not understand. It would not be so big a deal (not that less disrespect wouldn't be nice) except for when he posts on new person threads b/c new people are not going to know how to take him.

And really, it would not take many modifications in addition to changing tone and removing insults, for the advice to be more useful. Instead of assuming specific strengths--if he said "go with your kids strengths," that would make a world of difference. Even if he still encouraged trying certain specific things like reading or geometry etc, but acknowledged that strengths and differences vary.

He does the same thing with assuming all autistic children are hyperlexic, if only they were developed. The thing is if you are hyperlexic and/or you have a hyperlexic child, you know that it is very obvious b/c the child is drawn to letters, numbers and symbols, and you can tell the child is decoding. If your child is not hyperlexic, this is very clear, and I guess there might be parents who don't see it and ignore it, I doubt it, as reading to babies is very standard.

No amount of facilitation is going to get a child to decode until s/he is ready. Often autistics have decoding disabilities as wellas just not being hyperlexic, as I am sure you know in special ed. He is so married to this universality theory that he won't acknowledge what is clearly true.

Have you read the stuff online about how to deal with racial bullies in public? Like, if you see someone on a racist rant towards a person of color, you are supposed to ignore the person doing the abuse and just stand by the person bullied. That's how I feel about him. He's a bully and the best we can do is ignore him and form a protective circle around the latest person he's targeting.

Which is why I'm reading your message and completely, totally, ignoring his.

I totally agree about new people. I feel protective towards them. It's hard at first to recognize who is really an expert and who is just exhibiting that old stereotypical aspergian arrogance and long windedness. I've been trying to be more forthright about my credentials in my posting, and also trying to keep in mind that if I'm going to throw those credentials around, I also have to act like I belong to them. What I mean is that I can't go on tantrums. I can't let that temper get to me and to yell at people online... or go on my own aspergian rants.