premature diagnosis for a 20 month old?

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slightlyconcerned
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12 Jan 2019, 3:07 am

A doctor recently told me that he thought my 20 month old son has ASD which was kind of a shocker to my wife and I. We plan on following up with a speech therapist to get a more thorough exam but that won't be for a while due to life stuff so I was hoping there may be some people here who have a lot of experience with this who could offer some input.

Background on him...

The good:

Eye contact is good with everyone in the family and can hold it for prolonged periods but he's reluctant to engage people he doesn't know. Interaction with other children is very limited. He takes an interest in the older children in terms of watching but doesn't approach.

Pretend play seems good. He pushes cars, he has occasionally fed stuffed animals food, he constantly tries to put his cup to our mouths to feed us, and he understands what things are (can point out 20+ animals, several colors, and numbers/letters if it's fresh in his mind). Lots of games with us (hide and seek, throwing balls back and forth) and uses a lot of toys in the way they were intended including a few that are geared towards older children.

He isn't obsessive about any particular toy except phones (which we took away) where he could press the buttons for hours at a time on his toy phone and could scroll through apps/photos on our smart phones for hours as well. He especially likes the calculator.

No signs of rocking his head or putting things in his mouth, looking at things upside down or any kind of self harm. Seems to have average sensitivity to pain... he rarely falls or bumps into things and when he does he gets a bit pouty but it goes away quickly. Cries when mother leaves the room but if she's there all is well, and tantrums are otherwise very rare.

The bad:

speech is clearly delayed, he's currently saying only yes consistently and even then it's very muted and almost a whisper (sounds like "yshhh"). He signals no by shaking his hand. Occasionally he utters mom but only when in distress, and very occasionally utters a few other words like "blue" or "bub" for bubbles but also very muted and goes silent when we get excited about it. He babbled at a bit before a year but only occasionally and since then it slowly reduced to the point where it's very rare. Alternatively now he humms in varied tones, almost like he's singing. Does this count as regression? That seemed to be the doctors biggest concern.

Response to his name is inconsistent. If i'm sitting right beside him he ignores it completely. He'll occasionally look to his mother when she calls his name but not consistently if she's near by. If she's in another room he always comes running but it's hard to say if that's a response to his name or her voice.

He likes spinning things. Not so much any more, but when he was about 12 months he used to try to spin anything you'd give to him. Now he only does it for a couple of minutes a day (if that), but when he does he tenses which my doctor said is a red flag. When he spins things he stands over it and clenches his muscles as if it's too much excitement to handle. He has a similar reaction to specific tv shows that he gets really excited about (which we've since cut out of the equation).

Pointing is somewhat limited. He mostly takes us to get things he wants or reaches for them (even when they're clearly out of reach). He does however point to things when he wants to know what they are. He points at things in books rapid fire expecting us to say what they are / points at a picture of a family member in a photo album and then looks at the person in the picture and smiles. I'm not sure if this counts as the type of pointing that most diagnosis material is talking about. He has occasionally points at a plane flying over head or a bus passing by but it's somewhat rare.


Any opinions? I've done a bit of reading on it and was pretty surprised to hear that the doctor thought it was "likely" ASD (in his words).



jimmy m
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12 Jan 2019, 10:37 am

About 15%-25% of young children have some kind of communication disorder. Boys tend to develop language skills a little later than girls, but in general, kids may be labeled "late-talking children" if they speak less than 10 words by the age of 18 to 20 months, or fewer than 50 words by 21 to 30 months of age.

So perhaps trying to diagnosis at such an early age may be risky.

One of the members on this site Jason Lu wrote a book called "Eikona Bridge" that may be an interesting read. He is ASD and so are his two children. The book describes his successful method of teaching his children.

He observes that some children are picture thinkers and others are video thinkers. In life people operate as word thinkers and he views ASD as a communication problem rather than a behavioral problem. He has developed a method to better implement the transition from thinking in terms of pictures/videos into thinking in terms of symbols: letters & numbers. He found the best approach is to teach them how to read before you teach them how to speak. So what is your experience in teaching your child the letters of the alphabet and the numbers?



Jon81
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12 Jan 2019, 12:45 pm

That doctor will be your hero one day for giving you that information. I have been in your situation and I know exactly where you are heading right now. What you need to do now is prepare by learning as much as you can about communication with your child. I will be straight with you and say that most of the things you describe sounds like typical moderate autism to me. I was in the same denial as you and defending my son with stuff like "he can do that", "he sometimes does that". The truth is that your son is not on the same responsive level as a normal kid. All ASD kids don't show every trait either. The rocking part is something my son never had and he's not doing and self harm. He is however watching things from different angles and putting things in his mouth from time to time (it goes in periods). He also had periods of separation anxiety from both of us parents. Today I can't even leave the room and he starts crying. My son is going to be 3 years old in februari and we understood he had autism in april last year. It is not something common people can tell even though the signs are clear as daylight when you spend time with him.

I could probably write something to say that you shouldn't worry, but that's not going to help one bit. I remember one really really cruel post that I found when I was looking for symtoms for ASD. A parent had been writing a post that to begin with looked like as if her child was NT and she described every thing that child did and didn't do. I identified my son with everything she had written and at the end of her post she had written "my son has autism". Panic!! !! 8O

These are some of the things that signals autism to me and I also comment on it in comparison to may son:
Waving no with the hand.
- This is a typical thing these kids do. I find it quite comical.

Playing with the phone for hours.
- This is repetitive play. My son was evaluated having repetitive play for touching a dolls eyes a few times too many during one minute... The repetitive play sometimes mean that they play the same way with specific toys. Other times it's just a repetition of a motion. They usually pushes cars back and forward a couple of times and then they're done, sits down and don't know what to do next. My son is not especially stuck with one thing either but he usually plays in one particular way with each toy (loading the truck and then empty, loading and empty.)

Excitement about specific tv shows (he probably recognize the into tune as well)
- If he's getting excited and shows that by flapping his arms or kicking with his legs at 20 months it's a strong signal for ASD. It's like these kids keep some traits of a 12 month old child that gets excited.

Pointing is limited.
- My son loved pointing at pictures in books as a baby.Today he will only point when we do ABA or if I ask him to point at something he learned at a very young age like the clock. A kid without ASD is normally running around pointing at everything, it gets awfully obvious for us parents with ASD kids.

Takes you to the things he wants
- This is also a typical ASD thing. Normally they pull you by the finger without even looking at you. It can get really frustrating at times when they just pull and push your hand around and you have no clue what they want. PECS has helped us a lot in this department.

Ignores his name, but hear it at times.
- Yes, our son only listens when he's motivated to listen. I can knock on the car window as he's sitting inside and he's not even blinking. I can scream his name so loud that his ears will be damaged and still he won't hear me. But if I come in and tell him we're going to watch tv or go with the car he will hear me perfectly fine.

The positive things (even if he's got autism) is that he understands things that you want him to point out and that he has a somewhat normal toy play. Even the occasional pointing is something to be positive about. Many things could be down to you parents being such amazing parents that he's actually opening up and takes things in. Pointing out 20+ animals and several colors + numbers and letters is not something many 20 month kids can do. That's really a big strength!!

All in all this is just my honest opinion. I think it's important to be prepared for a situation where your child has ASD. It might turn out that he's just delayed and it's nothing, but the more you learn and study things you will probably know it yourself before the evaluation is over. Signs of autism become more apparent as he's heading towards 24 months.



slightlyconcerned
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13 Jan 2019, 3:53 am

I appreciate the honesty.

With respect to the phone thing I think I may have overstated the time spent with the phone. It used to be over an hour before he walked, these days it's closer to 15 minutes tops. it's more our cell phones that he's obsessed with but it's not really repetitive - he's trying out different apps. Playing with cars and toys is not particularly repetitive. He pushes a car down one track maybe 5 times, then he pushes it down a loop a few times, then he cranks the wheel, etc. Also he doesn't bite anything, look at things from unusual angles or walk on his toes.

His excitement for tv shows doesn't escalate to flapping either. He has never flapped or done any repetitive movement like that, just the tensing that concerns me. And as much as I dig it doesn't seem too clear wrt how much tensing is abnormal. Do non ASD children ever tense like that out of frustration/excitement? Absent of his favorite show (where he does it constantly) he doesn't do it often but it still occasionally flares up (maybe 5-10 times a day for a few seconds). It's like he's flexing his whole upper body and clenching his jaw.


jimmy m wrote:
About 15%-25% of young children have some kind of communication disorder. Boys tend to develop language skills a little later than girls, but in general, kids may be labeled "late-talking children" if they speak less than 10 words by the age of 18 to 20 months, or fewer than 50 words by 21 to 30 months of age.


He's actually spoken more than 10 words at this point but they're highly irregular. He said "train" today for instance when a train came on the screen but like a lot of words he's used it less than 5 times so I thought not appropriate to count on his list of vocab. If we include those occasional utterances and gestures that have clear meaning (ie: he makes a quacking signal with his hands for my father to say he wants him to put on a duck video) it would be well over 10. Should I be counting these?


Quote:
So perhaps trying to diagnosis at such an early age may be risky.

One of the members on this site Jason Lu wrote a book called "Eikona Bridge" that may be an interesting read. He is ASD and so are his two children. The book describes his successful method of teaching his children.

He observes that some children are picture thinkers and others are video thinkers. In life people operate as word thinkers and he views ASD as a communication problem rather than a behavioral problem. He has developed a method to better implement the transition from thinking in terms of pictures/videos into thinking in terms of symbols: letters & numbers. He found the best approach is to teach them how to read before you teach them how to speak. So what is your experience in teaching your child the letters of the alphabet and the numbers?


Thanks - will look the book up. My experience is that he seems engaged for short periods of time, watches, points, and then gets up and goes to do something else after 10 minutes-ish. It's hard to keep him engaged with numbers/letters (as opposed to animals, colors, vehicles, etc) but we're pretty persistent. I think by the end of the month he should have the alphabet and 1-10 down pat. Also trying to the numbers themselves with quantity of items in front of him, but that's not getting reliable results yet. May need to work on the methods.



Jon81
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13 Jan 2019, 12:11 pm

Your new information puts things in a different light, however there are some "warning flags". But a person like me will not be able to put a diagnosis on your kid, it need to be a professional to do that and they can absolutely point it out by the age of 20 months.

You are telling us a lot of things that he is doing, but the main issues are usually what they are NOT doing. What is he like when you are outside? Is he listening to you when you call his name? Is he waving goodbye to people when they're leaving? Is he pointing at something? Following along when you walk? Often crying for no apparent reason? If he's pointing, is he looking back at you for confirmation? Is he a bit more "careful" when he is outdoors playing around? When did he start to walk? Prefers being around adults instead of his peers?

I am worried about how weak these things with joint attention and eye contact seem to be with your son. You say he's able to keep eye contact. If you need to put it that way it is not a good sign. My son also keeps eye contact but he's not really coming up to me and showing me things. Is this your first kid? Mine was and it's really impossible to grasp how different these kids are to NT-kids before you get to spend time with a NT-kid. The presence is so extremely different. And someone don't need to be totally cut off to the entire world to have ASD.



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13 Jan 2019, 1:12 pm

slightlyconcerned wrote:
A doctor recently told me that he thought my 20 month old son has ASD which was kind of a shocker to my wife and I.

Congratulations! Having two children on the spectrum was the best thing that has happened to my wife and myself. We often look at each other and tell ourselves: "This is heaven!" We have two creative and happy children. Life can't be better.

Quote:
... speech is clearly delayed

Urghh... if your son indeed is autistic, I don't see any delay in his speech. I do see instead a delay in his reading skills, since you have not brought up this topic, at all. He is late. Or, said in another way: you are late, in developing your son's reading skills.

See, there are apples, and there are oranges. There are neurotypical children, and there are autistic children. If you want to peel an apple with your bare hand, you'll destroy the apple. Similarly, if you want to raise an autistic child the neurotypical way, you'll destroy the child. You have to learn that neither group is better than the other. You have to learn that these two groups of children develop differently. They have different routes of development.

I don't see any delay in your son, except that he is late in reading. And that, is probably your fault. Nowadays my measuring bar is: reading alphabet by 9 months, reading books by 18 months. I would never ask neurotypical children to learn to read before they learn to talk. Similarly, I would never ask autistic children to learn to talk before they learn to read.

Similarly, get used to making vegetable smoothie and juice. Our children started with breakfast smoothie and afternoon green juice, from they were 1 or 2 years old. It'll save you some headache about food pickiness down the line. For breakfast, in our case it's banana, avocado, spirulina, tumeric, black pepper, fish oi, flaxseed oil, lemon juice, and a bit of water, then use hand blender to make it into smoothie. Green juice made with Vitamix blender, and just add in any organic veggie and fruits that you might have at hand. You can make the juice every 3 or 4 days and save it in the fridge. Before serving, use a large bowl to hold some hot water, and a small bowl (inside the large bowl) to hold the juice. That's how you warm up the juice without destroying its nutrients.

Quote:
Any opinions?

What about drawing pictures for your son? Write speech bubbles, label objects in the house with words spelled out. Get a good magnetic drawing board (e.g. TOMY MegaSketcher) or LCD writing tablet (e.g. Boogie board). For more permanent messages, use blank 4x6 index cards and stuff them into 4x6 mini-photo albums. Learn to make animation video clips, too.

See, I have a happy family. I guess that is because we raised apples as apples, and not as oranges.

- - -

All that being said, speech delay also happens often in bilingual families. It's a well-known phenomenon.


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slightlyconcerned
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13 Jan 2019, 8:41 pm

Jon81 wrote:
Your new information puts things in a different light, however there are some "warning flags". But a person like me will not be able to put a diagnosis on your kid, it need to be a professional to do that and they can absolutely point it out by the age of 20 months.

You are telling us a lot of things that he is doing, but the main issues are usually what they are NOT doing. What is he like when you are outside? Is he listening to you when you call his name? Is he waving goodbye to people when they're leaving? Is he pointing at something? Following along when you walk? Often crying for no apparent reason? If he's pointing, is he looking back at you for confirmation? Is he a bit more "careful" when he is outdoors playing around? When did he start to walk? Prefers being around adults instead of his peers?


The professional appointment is about 10 days away. I'm having a hard time sleeping with the uncertainty while my wife is pretty nonchalant about it and thinks I answered the doctors questions in a leading way that misrepresented the situation.

He is more careful outside and walks very slow, responds when we call but hard to tell if that's to his name or just our voice. He occasionally wanders away but usually turns around to us and runs back quickly when he realizes we're not close. Lots of dragging us by the finger or walking over to something - much more so than pointing which happens but is rare. Maybe notable is he doesn't like the feeling of sand and won't walk on it barefoot. I've read that obsessively filing sand or grass through fingers is a sign... he does not do that. He would however pick flowers for us from the time he started walking at 12 months.

The only thing that stands out to me that he's not doing is vocalizing. Comprehension seems very reasonable. Seems possible it may be related to his gag reflex which limits his ability to eat hard foods (only eats soft pastas and semi mushed vegetables) but im not having an easy time finding research on what that may be. On the other hand he's also had acid reflux which I've heard is also associated with ASD... it has since been treated with medication.

Definitely prefers adults to peers. This may be because he doesn't spend much time around other children. We've been slacking on this front definitely and are looking to change that in the near future.

Quote:
I am worried about how weak these things with joint attention and eye contact seem to be with your son. You say he's able to keep eye contact. If you need to put it that way it is not a good sign. My son also keeps eye contact but he's not really coming up to me and showing me things. Is this your first kid? Mine was and it's really impossible to grasp how different these kids are to NT-kids before you get to spend time with a NT-kid. The presence is so extremely different. And someone don't need to be totally cut off to the entire world to have ASD.


He shows us things but he brings it to us generally, not point. It is our first child.

Quote:
I don't see any delay in your son, except that he is late in reading. And that, is probably your fault. Nowadays my measuring bar is: reading alphabet by 9 months, reading books by 18 months. I would never ask neurotypical children to learn to read before they learn to talk. Similarly, I would never ask autistic children to learn to talk before they learn to read.


Is that typical of ASD children? My understanding is that it's rarely even diagnosed before 2.

Quote:
What about drawing pictures for your son? Write speech bubbles, label objects in the house with words spelled out. Get a good magnetic drawing board (e.g. TOMY MegaSketcher) or LCD writing tablet (e.g. Boogie board). For more permanent messages, use blank 4x6 index cards and stuff them into 4x6 mini-photo albums. Learn to make animation video clips, too.

See, I have a happy family. I guess that is because we raised apples as apples, and not as oranges.

- - -

All that being said, speech delay also happens often in bilingual families. It's a well-known phenomenon.


We are bilingual (or my wifes family speaks a different language to each other), probably a 60/40 split in terms of exposure. He's also the first born son and has limited time with children. I think this all likely contributes but I don't know to what extent.

We draw things on boards routinely for him. Lots of picture books too. We have multiple etch a sketches and use flash cards. He is never on his own and we're always reading or playing with him.



eikonabridge
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13 Jan 2019, 11:17 pm

slightlyconcerned wrote:
My understanding is that it's rarely even diagnosed before 2.

Our son was suspected at 12 months. Preliminary diagnosis given at 14 months, which qualified him for services, immediately.

It really depends on other factors. For one thing: autism is genetic. Our daughter (older) was already on the spectrum, so it made our son's preliminary diagnosis almost trivial/obvious. Both were only officially confirmed after age 3. But, you don't need to wait until official diagnosis. Preliminary diagnosis triggers all the services immediately.

I never had problem communicating with my daughter. I communicated with her via drawing pictures. I wasted a year (between when my son was 1.5 years old to 2.5 years old) before I came to understand my son. With my son, I had to communicate with him via video clips. After I understood my son (and autism in general), I became worry free, ever after. While other people worried about speech, I never worried an iota about it. Both of my children started to really talk around 4.5 years of age. Yet, both were reading books while still 2 years old. For your reference, my son wrote his first computer program when he was still 5 years old. So, if you asked me whether I had any concerns that he was a late talker, I can tell you: not in the slightest. Today, all teachers go crazy about my son in school. They go out of their ways to collaborate with me. As my daughter, she has composed her 3rd song and performed on stage in Xmas. The point I want to make is: let autistic children be who they are. They have a totally different path of development. Don't apply the schedule of neurotypical children on autistic children. Autistic children can see things that neurotypical children cannot see, and solve problems that neurotypical children cannot solve. Autistic children shine in this robotic era.

As for your son's case: it could still simply be a bilingual-family issue, and not autism.


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slightlyconcerned
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14 Jan 2019, 6:18 am

That’s amazing that you’ve been able to make that progress. The doctor who said he thought it might be ASD also strongly recommended against any screen time or electronic devices though - if he is in fact ASD i take it that means you wouldn’t deprive him of this? He loves laptops that provide feedback and visuals including letters/numbers. Being able to use videos opens up a lot of options that I think he’d be receptive to.

The doctor actually said he thought screen time might contribute to the onset of ASD which struck me as odd. And I think the fact that we told him previously that we were letting him use these devices primed him to make this diagnosis possibly.

FWIW there’s no history of it in my family that’s been diagnosed. Hearing your results I almost want him to have it. 8O



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14 Jan 2019, 8:24 am

Your doctor seems to know nothing on ASD. If you still consider a diagnosis, at least find a second opinion.

20 months is really early, children of that age normally develop unevenly.
And ASD is a spectrum. Your child may have just some traits of it. I decided not to diagnose my daughter, just explain that she is very introverted and sensitive to noise and she thinks in pictures. It doesn't freak people out like some sophisticated diagnosis would but gives enough understanding about her own ways and needs. She is in a mainstream school, first grade, doing well, she even has friends.


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Jon81
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15 Jan 2019, 1:56 pm

slightlyconcerned wrote:
The doctor actually said he thought screen time might contribute to the onset of ASD which struck me as odd. And I think the fact that we told him previously that we were letting him use these devices primed him to make this diagnosis possibly.

FWIW there’s no history of it in my family that’s been diagnosed. Hearing your results I almost want him to have it. 8O


That's a very stupid thing to say by a doctor. I'm not pro screen time regardless of ASD or not, but to say something as stupid as that is quite remarkable. Parents at your stage are already trying to turn every stone in the quest of finding out what could have "gone wrong". I totally agree with Eikona about it being genetic and there's nothing you can do about it. There's a chance someone in your family is autistic but never had a diagnosis because it's not everyone who's got a problem with their life.

I hope you will come back and share your evaluation of your son with us later on.

And I'll borrow this thread to ask Jason Lu (eikonabridge) if it's true he's also autistic?



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16 Jan 2019, 12:38 am

Jon81 wrote:
And I'll borrow this thread to ask Jason Lu (eikonabridge) if it's true he's also autistic?

Of course I am. But you have to take into account that I grew up in less developed countries some 50 years ago or so, (English was my fourth language) so autism was unheard of. I always tell my daughter that we are like twins. I understand my daughter by reflex. This topic is too long to go into details. But it suffices to say that I was kicked out of my middle school due to bad eye contact and some behavior issues. I was a mediocre student. Then my family moved to a different country, and hell turned into heaven for me. I got the highest score in physics for the college entrance exam in the new country, and later got a Ph.D. in theoretical physics from a top university here in US. All in all, I did OK in life. I have a nephew with moderate autism from my father side (plus a niece with speech delay), so the genetic component is absolutely certain. The only thing I am not sure is whether the genes came from my grandpa or grandma on my father side. My wife is neurotypical, but on her side we have so many 2nd generation children on the spectrum that I lose count. See, autism is not just genetic, the epigenetic component also plays a role, so even identical twins still can differ (it's well-known that one twin could be neurotypical and the other autistic.) Autism can skip generation, too. If I manage to understand my two autistic children, it's because I know how it feels like to be autistic, and because I've hanged around so many people on the spectrum in my life (including many friends in engineering and science programs.) My basic take is: all misery stops with me, enough is enough. So, I make sure my children don't have to go through the bad times that I had to go through. Sometimes I look at them and I envy their lives. Ha ha. I have made a lot products in my life, but my wife says our two children are the best products that I have ever made!


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slightlyconcerned
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18 Jan 2019, 4:10 pm

In the interest of full disclosure this doctor also expressed an interest in studying him at 12 month for his autism research because we told him that he was getting x hours of screen time a day (i forget the exact number but it was 1-2), and this was before any developmental delays were apparent.

Also a possible explanation is that after i expressed concern to him in the moment about screen time and how my wife / her mother were not showing enough discretion in limiting it, he may have thought that a tentative diagnosis would be enough to create a sense of urgency to stop them.