Having problems coping

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Ha. I am not writing him off. ASD diagnosis or not I think he is just fine. He is certainly happy. Do know that I view my role as a parent to provide my child with best skill set I can to be successful in life (whatever that may be).

With the support of this forum I have re-centered and thrown myself back into the game. I do question the value of these follow up appointments. If all they are going to do is point out how my son is deficient I can think of a better use of our time.

You are right. I was pulling up baby pictures and video and am sad at how fast my babies have grown. I do need to enjoy this time.
I have taken a similar approach to you regarding the sensory issues- they have mostly resolved on their own.
My intuition is that my kid is just fine. And I will continue to work with him to prepare for the life ahead of him- what ever that may be. As far as being scared of the experts they only thing I am scared of is the ramifications of what would happen if I punched them in the face for criticizing my baby. I did ask them if they have ever misdiagnosed anyone with ASD before. Oh they were so very smug and arrogant with their statement that they were experts.
And congrats to you and your son on what appears to be a successful launch!

I really do think that someone needs to take a look at stress that is placed on the family when a DX of ASD is handed down. The most intensely stressful statement made to me was that every minute neural pathways were being laid down in his brain and every minute that he was allowed to space out/play alone/and god forbid sleep was a minute that was lost.

As God is my witness, the next person that tells me how critical it is for him to start speaking will get punched in the mouth. Fact, the NT twin is not speaking either and no one worried about that. At all. Fact, this is a multilingual household (45% Portugese; 45% English; 10% Japanese). Fact, only 1 of my 3 siblings spoke before age 2. Fact, he has 3 half siblings all of whom were diagnosed with speech delay.

So what I am willing to do is an ESDM/Floortime approach. I made mistakes when he first got diagnosed. I focused on the milestones. To this day the kid will not stack blocks for me (will happily do it for others though). The day I realized that mommy wasn't fun was the day I got over all his 'deficiencies'. We are going to enjoy life and let us see where this approach takes us.

Can you expound upon this? I never really thought he had RRB and neither do his therapists. The ABA therapist says he did like to study wheels but she felt it was with a purpose (i.e. he was legit trying to figure out how they worked). In the interview although he pushed the car back and forth it 'wasn't enough.' He did like cause and effect toys (i.e. push a button and the toy would light up or make a noise). Even so he would do this for maybe 5 minutes. Honestly in reading the assessment of him their observed RRBs was really weak in my opinion.

The therapists will not challenge a diagnosis but I believe they think it is sensory processing disorder coupled with a speech delay.

Still, he does prefer to be by himself, takes a few minutes to warm up to others, can hand flap when overly excited, does toe walk some, and lost speech at one point. He doesn't point, follow points or gazes, or do a lot of imitation or imaginative play. However, this kid recently had tubes placed and has started saying words. I did tell the assessors that he had chronic fluid in his ears but I was told that chronic ear infections are what made the difference. Go figure. I thought he was just an introvert which is common in this family.

And I have read your other posts so I have a question for you and well, everyone really. The assessors told me that by definition autism was a lifelong disability and impairment. So I was not trying to be argumentative but I did ask since my son was neither disabled or impaired how could he have autism? (Boy you can only imagine the pitiful, patronizing looks I got). Based on your posts, you are happy, successful, in a fulfilling relationship, etc. So exactly how are you impaired or disabled? If not this, then what exactly is it that they want from Autistic people?

Autism is a spectrum ergo the way it effects individuals is a spectrum too. Some people will have more obvious deficits and difficulties than others.
I come from a family of high functioning people. My Uncle has two doctorates, one in an obscure branch of physics and the other in theoretical chemistry. His son, also autistic, was head of cyber security for a large corporation at the age of 22. My son is knocking it out of the park at Uni. We are all odd bods but not to the point any of us would consider ourselves disabled. That's not to say autism is like that for everyone.
Autism is a condition that's not terribly well understood so anyone who claims to be an expert is claiming expertise in something that nobody really understands and what they 'think' they understand changes over time. Tony Attwood is a big name in Autism and he has changed his point of view over the years. Originally he thought that children with autism didn't particularly experience emotions. More recently he's done a 180 and now says children on the spectrum feel things very deeply and can shut themselves away due to the overwhelming nature of their emotions.
Understanding autism is a work in progress and has a long way to go. My experience of it is it doesn't have to be disabling. It can be for some, but not all and I think the current thinking that it HAS to be a disability is not helpful. All people will struggle in some areas. I've yet to meet one single perfect person, autistic or otherwise.

Ugh. To me that is just nuts. First-off NT babies are not made to work 40 hours a week (or whatever they were proposing) and they are laying down neural pathways and pruning pathways, too. Secondly, not every minute of everyday has to be social. of course, you need to interact with the baby, but not every second. Next is the assumption is that you have this short window of opportunity to mitigate the negative effects of autism and if you lose it, you can never improve. This is ridiculous. Autistic people develop at their own rates and it does not match the NT milestone time schedules. Autism, by definition involves a developmental delay and I have always viewed that as meaning a larger window for growth. I have seen nothing that indicates you need to make insane progress in everything that may be a negative issue within an immediate 3 yr - 5 yr span.

As far as why it is a disability, I agree with bunnyb in that it is a spectrum and the effects vary. There are strengths and weaknesses and some of the features like poor communication skills can adversely effect functioning in the NT world. There are also strengths like hyperfocus on special interests which can mean quick absorption, excellent retention and heightened creativity within a specific or more than one specific subjects.

Like most things in the DSM, if you get a diagnosis it implies that you are having issues functioning -- or you would not get one due to sub clinical levels of the disorder. Many people who are described as cured (and who were not misdiagnosed) typically acquire enough coping skills to function well enough to shed the label. They are still autistic, but not struggling enough to maintain a diagnosis. So, it is a lifelong status, regardless, because the person is still not NT.

In terms of the very young, a diagnosis means not hitting certain milestones involving language and communication and having other correlated characteristics like stims that are in the rigidity category. Babies and toddlers are not usually required to maintain a lot of responsibilities, so to say they are having pragmatic functionality issues sounds pretty silly, so they don't speak of it that way. Usually they talk about speech or other communication/social delays.

Do not isolate them, let communicate with their kids, be happy, experience different emotions.
When studying in school and college, I'm pretty sure they could make that, it won't be easy but they'll cope with everything. There so many services which will help them, you can go to the website and see for yourself. Just try to treat them like normal kids.

Kids may have other issues besides autism. That's my concern. I understand autism. The analogy in physics is what we call a "renormalized field." I won't get into that, but you could look at the "dewdrops on a leaf" analogy: larger and larger dewdrops start to form, leaving many spots on the leaf dry.

http://www.eikonabridge.com/AMoRe.pdf

In terms of autism, that means the entire brain undergoes a process of maximization of contrasts. Many spots become void (e.g. social and verbal areas), and some spots receive enhanced attention (e.g. sensory issues, specialized interests, repetitive behaviors, etc.) So some kids are extremely sensitive to noise, or to the flickering of fluorescent light. Now, that's the brain of an autistic child. Development means new neural pathways (in the sense of software connections: the hardware connections are all there, there is no problem). If developed properly, eventually all the necessary connections will be established in the brain. The key is to understand the nature of the brain of these children. Don't force verbal, social, behavioral skills onto these children: it's counterproductive. If you start instead from their interests, what make them happy, and develop their neural connections from there, you will succeed in reaching even into their verbal, social, and behavioral areas. Very simple. It's been known for thousands of years in many Eastern religions/philosophies, actually, nothing new there. You don't need quantum physics to understand all that. In short, as long as it is autism, there is a way to raise these children. The path is a bit unusual from neurotypical person's point of view, but once you understand it, there is no mystery about it. I always tell people that my son learned all the skills he'll ever need to learn from elevators, and then some. People would scratch their heads at my comments: they just can't see how elevators can do something, such as to help my son to eliminate his sensory problem about wearing hats. Long story, but my son learned to talk, to write, to draw, to type on computers, to do math problems, to get rid of quite of few sensory/rigidity problem, to do computer programing, to initiate conversation with strangers, to socialize (we have an elevator riding club, now), and now to write Chinese characters. All from elevators.

Now, if the child doesn't exhibit the typical focus on specialized interests, then it may not be autism. Or it maybe something else on top of autism.


There are other causes for speech delay. Bilingual families very often have children with speech delay, for instance. Same with children with hearing problems.


So he did have ear infection issues, I guess? See, in all the testings on autism, they also check, and check again, on children's hearing. This is because hearing issues can also cause some autism-like symptoms. When children have hearing issues, guess what? They'll rely more on their visual cortex (which is a forte of autistic people), which leads to autism-like symptoms.


See, one feature about autistic people is we tend to look at people from a third-person's point of view. (Some of us don't even use personal pronouns.) We don't understand the concept of obedience/servitude in front of authority. We view everyone as an equal. My point is, the assessors have a definition about autism, and I have mine: "Autism means unmitigated auto-feedback due to an over-connected brain." Unmitigated? You mitigate it, you develop the children properly, and you'll have happy and smart children.


I am still happy and successful everyday. Everyday I look at my children, and I feel sorry for other autistic children out there. (I do hang around regularly with other families with children on the spectrum.) A lot of people in our society don't understand autistic people. They want to drive a square peg into a round hole.

As an example: look at some of the postings here in this forum. Many responders would start their replies with a praise to original posters, to provide encouragement. To make people feel good and welcome. To soften the ground, so to speak. That is a neurotypical behavior. It's all about manipulation. Two years ago or so, people would jump on me for not doing the same. See, neurotypical (or neurotyipcally brain-washed) people like to manipulate each other. When people behave differently, they get disturbed. Instead of acceptance, they start to label people as sick/disabled/impaired. See, I've looked through the past postings of many of these people. And guess what? They are neither successful nor happy in their lives. And they want me to follow their model of misery? No thanks. Ha ha. I much prefer to keep my happy life and my children's happy lives. Fast-forward two years, and many of those forum members are gone (especially moms that enjoyed praises from each other, heavily used drugs on their children, and posted detailed violent behaviors of their children for the whole world to see). Those that remain here have become more civilized and have given me peace, as they should. I am still a direct person everyday. I am still happy everyday. Moreover, my wife (a neurotypical person) always tells me that she is becoming more and more direct with other people. She would joke that she is becoming an autistic person. When I prepared some PowerPoint meetings to address issue with other people, I would consult with her on whether I could be too harsh in my wording, she would cheer on my side and tell me to be myself. It's totally interesting to see her attitude change: 10 years ago, she was always the person to hold me back, to pull me back. Today, she is the person that tells me to go for it. And truly, we are so much happier today than 10 years ago. It feels great to be understood.

So, my point is, don't rely on other people's words too much. You are your own authority figure. Other people can be wrong. And that is what I tell everyone. And that is what I tell my children. I've always treated my children as equal-rights human beings. Why would I label someone as sick/impaired/disabled when I know they are smarter than I am? Why would I label someone as sick/impaired/disabled I know that one day they'll grow up to be my teachers? Ha!

I STRONGLY disagree with this statement. It is very unfair to a lot of kind and well intentioned people to assume that trying to be kind and supportive is a version of manipulation.

I am glad you are happy. I am glad your wife is happy. I am glad your kids are happy. But why, if you don't want to be judged yourself, are you harshly judging others, as you have done here? That is not fair. There are many, many ways of being that can be considered valid, and being kind to each other is not some manipulative game. It is about being KIND.

Or do you not see manipulation as something negative? If not, please understand that in the NT world that sort of accusation IS VERY negative. People should not be trying to manipulate each other.

If you do not understand the NT world that is fine. If you are happy and successful in your life without doing so, there is no need for you to. But don't, then, make negative assumptions about their motives and actions. That is not fair or accurate, and I sincerely hope you are not teaching these inaccurate views to your children.

You have a lot of great ideas, and your input, I know, is much appreciated. But your way is not the only way and will not be the right way for everyone. That is why we all share on here, and allow the readers to figure out what will work best for their unique family.

My ASD son is an incredibly happy person who has also learned how to function in the NT world and give NTs what they need. He does it without being cynical about it; he has no desire to hurt other people. It is possible for that kind of balance to exist.

Thank you; very well said.

Whether or not people give you "peace" or not, depends on whether or not your post is read (Not everyone reads all posts) and if it contains an element or more that is offensive, how offensive that element it is, and whether or not the person considers it worth their time to bother correcting it relative to the offensiveness of what was written, and whether or not that gives the post too much attention or hijacks a thread.

For example, the biggest problem I have with this current post is that you are actively discouraging people from posting their heavier more substantive problems by blaming the parent both for the behavior and for posting about it to try to get help and advice.

No one should feel ashamed to post if their child is having problems. I have not seen anyone doxxing their child, while posting. Most posters have no need to curate their image b/c they are not trying to sell a book or hold themselves up as some kind of faux expert.

Most posters who have stuck around for any length of time have both asked and answered questions. They don't fancy themselves ultimate authorities and they don't feel the need to behave as though they do.

It is not especially relevant to me what your wife thinks about your posts. Some posts are fine or mostly fine. Some have elements that are helpful to some people. Some are mostly inflammatory. I suspect you know most of the time when you are being inflammatory.

I support in What she wrote above.

I recently met one family at speech clinic that my son goes. Their child received late diagnosis at age 7. The family has received some good amount of funding but I found his mum is not very keen to spend their time on therapies.

I have been in this ASD world for about past 3.5 years and I could see very subtle issues on the child but they could potentially hold him back in his education or his social life, possibly employment.
The child dad is more aware of the issues but mum is so stressed and she would rather not to bother him and herself.

I believe he will thrive in the future if they grab this chance to teach him some important life skills. This is a really good time to do something about it for him because if he becomes sub-clinical (by chance and good luck) he won't be able to get any useful help from anyone in his adult life when he feels he needs a help. (at least in Australia).

I found it is very hard to navigate any disability system because they are lot of uncertainty and stress, hypes, But there are reasons in what works and not works and in why clinicians are telling you things. After 3.5 years, I understand these things (in the way I perceive) So I don't know about what intensity is good for your child but I really recommend giving your child good early intervention if any clinicians recommended.

I understand what you are talking about. I do not like people push other people behave in the same way too. But I want to let you know those people really mean to say kind words to people. People (like NT) use words to express their feeling. I use words to support others and express my feelings too. I understand people manipulate others in the way sometime but not all the time.

I actually bought your book from Amazon and have read it. It was really good reading and I support in how you raised your children and you really did good job. Your children are happy and you and your wife are happy too. It is really good.

However, I feel your posts might have been misunderstood saying "if you are parents are happy and children are happy, everything is gonna be OK." (correct me if I was wrong).
What you did with your children are more complex and well planned with a lot of efforts and preparation. I think your understanding about Autism is quite good but people misunderstand that what you did with your children can be easily done without reading your book.

Your son liked to use vacuum cleaner for really long time when he was young. But on some posts, people probably mistakenly perceive your post is saying like children can do whatever they are interested as much as they want. But in your book, (if my memory is correct) clearly you say "my son should be redirected to other activities or the stimming should be turned into functional plays." Those important information suggested by your book are not known unless people read your book.

I think your book has a lot to offer with a lot of important information and your interesting perception about autism.
Although I think your book is really good reading, I still believe in conventional therapy services (including ABA) a lot.
So I hope more people read your book along with having children in conventional therapies services.

There is no need to buy my book. I've said it before and I'll say it again. Information is free in this world. My postings in this forum actually has all the information in the book, and more. The book is simply a means for me to establish "credentials." Some of the important postings include:
- "Yogurt Is Yummy, Because It Has Honey (Modulation, Part 2)"
- AMoRe.pdf: "AMoRe: Autism, Modulation, Renormalization"
- Tomatoes.pdf: "Tomatoes, color blindness, autism, schizophrenia, Down syndrome, and evolution"
- anxiety.pdf: "How to solve anxiety problems"
- fun_and_facts.pdf: "Fun and Facts"
People that wish to find all these things, can Google. I am not going to post the links again. Information is free for those who choose to seek. And at any rate it's not hard to track down the 200+ postings I've written in this forum. Anyone that goes back 30 postings will probably find everything.

As for ABA, we use ABA. But the thing is, parents are like commanders-in-chief: they need to be in charge, and instruct ABA therapists what to do. New therapists often have little idea on what to do. Case in example, recently a therapist told my son: "look at me when you talk to me" (when my son was saying good-bye to her... my son usually does have excellent eye contact when talking to people.) She loves my son, but she has no idea that we don't subscribe to the traditional approaches. My wife would jump in and tell her to stop doing those things. See, in this example, people create problems where there was none. Raising autistic children is fundamentally different from raising neurotypical children. Yes, neurotypical children respond well to punishment and reward. But that approach is just totally wrong for autistic children. People just don't understand that the usage of authority is wrong for these children. People don't realize that you need to treat autistic children as equal-rights human beings. People don't see another way, but there IS another way of raising autistic children. People view autistic children as having issues, without realizing how they themselves are being viewed by the autistic children:



See, the way most other people comment about my "attitude" here mimics exactly the problem of our society not understanding autistic people. Ha ha. I talk here about facts and how to raise autistic children, other people get lost in "behaviors" and cannot see the real message behind. That is expected: if our society hasn't learned a thing about autism in 74 years, what do you expect? See, people that provide nice praises are also the people that harbor hate. It's the two sides of the same coin. Why don't people look at how Donald Trump lavishly praises someone when he hires them, and the way how he then fires them soon afterwards? I mean, I get tired of watching the same show in real life, Donald is not the exception: he is the rule. Manipulation is manipulation. Crystal clear.

As for your other comments, I'll summarize it all into a diagram. I have one and only one tool to deal with all the issues of autism. That's called "modulation." Seriously, autism to me is one single issue, solvable with one single tool. After all these years, I think the Tai Chi diagram (Taijitu) captures best the essence behind all what I have been saying and doing:

There is a space-time wormhole tunnel connecting the two little dots. And the direction of flow is always from Yang to Yin. Now, for people to see and understand all that, and put it into practice? Ha! Good luck.

People would focus on "attitude" issues, people would get lost in my drawings and video clips. People can't see the forest because of the trees. I mean, autism is trivial, elegant and beautiful. People make a big mess out of it, and can't see autism's true face.

See, my son was super-hyperactive when he was 2.5 years old. He couldn't stay still for 2 or 3 seconds. Nowadays (7 years old), whenever I look at him drawing and writing on big sheets of paper, I would take a deep breath and let out a sigh... So, that's what they call a hyperactive child? A child that can stay calm and draw and write for long periods of time, without anyone telling him to? I let out a sigh because my life is so easy nowadays, whereas other families struggle.

A few days ago, my son just sat down, drew a mask and chainsaw, and made himself into Jason Voorhees (the main character from "Friday the 13th," which appears also in the Roblox game he plays nowadays.) The mask came with a "dangerous" sign. You should see the big grin on his face. It totally cracked me up. Seriously, lately we've had so much fun. It's like a new surprise everyday. I look at my children's life, my own life as a child, and the lives of other autistic children, and I can't help but feeling poignant and helpless.

https://www.roblox.com/library/255434456/Jason-Voorhees

Check your county to see if he can be put in an autistic support pre-school. Let his twin go on and excel but inspire him to love his brother, to support and protect him. These types of autistic support classrooms allow a lot of parental involvement. After some interaction at a comfortable pace for your one child, the other child can be a nice, supportive ladder of development for his sibling. Help them to bond at a young age. It will be important for the family as a whole.
If you get proper intervention early for your child, it will better later on. Don't get depressed and give up. Your duty now is to get help for your son. You have a long road ahead of you, there's no point in lying down and getting run over. Get behind the wheel and do what you can do because you are a good mom. Try your local school district as well. Make a visit if you find a place and stay around to see how it operates. Don't look so much to other parents for support for more than just what teacher to talk to and what class to go to. These parents can be just as mean and competitive as everybody else. Your strongest support is you, your other child, your husband, and family(maybe?) and the staff of the school. Also, this website is pretty good too. As your child grows, don't focus so much on the social part of schooling. Focus on the educational part and life skills part. Social isn't that big of a deal as people make it out to be. I've learned at the age of 57 that people in general aren't that nice to others who need more time and more help.
One day at a time, one step at a time. God bless.

weird, looking back at this thread, what's it with all the OLD parents?

you wouldn't think so, but older parents seem almost more insecure in parenting

less energy to fool around already and children become the fragile beings they're not supposed to be, so often

it should be known beforehand, you have a hard time raising kids after a certain age,

but its a must to be with them physically too, instead of overthinking all that much


maybe it's being further away from one's own childhood, idk