Make me less scared of autism

amother

Silver

Thu, Apr 19 2018, 12:33 am

andrea levy wrote:

Is he verbal? Better prognosis with early detection and speech by 3

Yes. He is verbal. He actually spoke very early. Other milestones were kind of funky but nothing terribly out of the ordinary. For example, his motor skills were delayed for a long time and then it all happened at once within a month or two. The fact that he is able to express so much in language actually bumped up his score in the communication category to an unhelpfully high score, because his receptive communication score was terrible. (Basically he talks but doesn't listen, haha.) I told the team doing the evaluation that he talks a lot, has a great vocabulary, has been telling me almost nothing but the same story all day every day for about 6 weeks now. He is just very fascinated by let's say, "race cars" (changing the details a bit here for privacy) and telling me the same story about a race car over and over and over and over. If something looks like a race car or reminds him of a race car he will excitedly point it out, then tell the story again. (Not an especially complicated story, something simple along the lines of "a race car went around the track and won the race, yay!") If I try to add to the story or shift it to include something else... nope, he's not having it. To me it just seems strange that he can speak and make impressive connections between things, even advanced connections that I wouldn't expect a 2-year old to understand, but some of the most basic, age-appropriate type things that are typically expected of children even younger than him, he just can't/won't do it for whatever reason. When I started seeing that kind of thing (he can do ABC hard thing, but not XYZ easy thing) it really hit me that something is off with him, he isn't being defiant, he just legitimately isn't getting it for some reason.

amother

Silver

Thu, Apr 19 2018, 12:38 am

amother wrote:

Glad my post gave you hope. Just last week my son started saying things like "I'm sad," "I'm scared" etc. Even though he expressed emotion he'd never SAID non concrete things before. (he'll be 3 in August iyh.) Now he says these things with the cutest faces to match.

Aww so cute!! That must feel amazing to see him come so far! Using feeling words is something they asked me about specifically and I told them that despite my best efforts (and I started naming feeling words for him practically from birth) he does not use language this way. If I ask him if he feels sad it isn't clear if he understands what I'm saying. If I ask if he is happy he bursts into song, "happy birthday to you, happy birthday to you!!!" I didn't recognize this as an issue until his evaluation. I'm so happy your son is doing well! That's really great!

creditcards

Thu, Apr 19 2018, 12:52 am

I haven't seen him, but he sounds to verbal and expressive to be autistic. He smiles to you when you smile to him. I couldn't for the life of mine get my daughter to smile back at me. I made all types of smirks and funny sounds and She would just stare blankly at me. She would smile on her own sometimes if she enjoyed something but not smile to me because I just smiled to her. My son 3 and half years old now can't answer any of those questions either. He is a little delayed for his age but not autistic at all. I test all my babies for AUTISM. I just look at them and smile at them. Just randomly. And they usually smile right back. Then I know they are not autistic.

amother

Silver

Thu, Apr 19 2018, 1:07 am

creditcards wrote:

I hear that. I am not jumping to any conclusions, I just started this thread to make myself less afraid of the possibility of autism if that's what it turns out to be. My son has some delays for sure. It is becoming a safety concern at home, school, and everywhere. I found out at his evaluation the extent to which his school actually had to modify his classroom to accommodate him (I am awed and grateful that they did this for him and didn't make it a big deal when they talked to me!) and he pretty much has to have a 1:1 teacher for anything important (walking down the hall, eating, anytime a task is required to be done) and they have had to make significant physical changes to the room to keep him safe. Things that really should not have to be done to keep a 2.5 year old safe because most of them know better by this age and/or can be redirected. Whatever it turns out his problem is I am going to help him the best I can. For now they are telling me it's a problem with "processing" and he scored low in social/emotional for a number of reasons I didn't really expect to matter for testing purposes (such as not taking any social cues from other children, still almost exclusively parallel playing). Right now he is Mr. Popular because he is off in his own world doing fun and exciting things (singing, dancing, playing, shouting what he sees out the window) and the other kids are drawn to him and they play "with" him, but really what is happening is they are playing with each other, next to him. He may or may not notice or care that they are following his lead. I worry that as these children grow older they will recognize that my son is not really engaging with them, he's just kind of doing his own thing, know what I mean? At a certain point this is going to hurt him socially. There will also be more consequences for more things as he gets older, and I think that without proper intervention he will reach a point of frustration with school and his inability to get along there with the rules, which can translate into academic problems, worsening of behavior problems, worsening of social problems. I guess the truth is that whether or not his problem is called "autism" shouldn't concern me. It already is what it is regardless of what it's called.

amother

Rose

Thu, Apr 19 2018, 1:10 am

amother wrote:

Sounds familiar. Just a month ago, if I'd asked my son if he was happy he'd sing "if you're happy and you know it clap your hands." Maybe I'm naive but I was not panicking at all. I've had siblings that were late bloomers and my mother-in-law swears her (extremely bright, charming) son hardly spoke till he was 3.

creditcards

Thu, Apr 19 2018, 1:12 am

amother wrote:

It's hard to know until he is a bit older because he sounds so borderline. But better to get a diagnosis if you can so he can get more therapy
Does he play well with siblings and kids he is familiar with?

The fact that he is pointing. Looks up when he is in middle of his own thing even if not always. Smiles back to you and talking so much are all good signs of not being autistic.
Can he ask for what he needs? Even if he says just one word?

Last edited by creditcards on Thu, Apr 19 2018, 1:34 am; edited 2 times in total

Zehava

Thu, Apr 19 2018, 5:09 am

creditcards wrote:

I hate to burst your bubble credit cards but a baby can smile at you and still turn autistic.
In fact a 3 and a half year old can be precocious, extremely expressive in every way, loving, and totally normal, and still turn out autistic. Severely autistic. I’ve watched it happen.

amother

Vermilion

Thu, Apr 19 2018, 6:15 am

creditcards wrote:

That is not how it works. If it was that simple there would be no need to evaluate, we'd just all test if our babies smiled. My autistic son smiled back at me from about 2 months, like the average baby, even though looking back, he did have very poor eye contact. He was a very "chill" baby (which turned out to be because he didn't really notice his surroundings). He was also talking really early but like op's son, you couldn't really converse with him. He was in his own little world and not very aware of his surroundings. He is a very borderline case, although he qualified for a bunch of services at 2, he was not diagnosed until 4, largely because he is very high functioning. But he definitely is on the spectrum. He's doing very well, people who don't know about it would never guess anything was off unless they spent a few days with him. He's academically advanced but his social skills are still quite poor. When I look at his younger neurotypical siblings, the difference is stark. For example, my four year old can tell me details about his friends like how many siblings they have, what they like to eat, and who their favorite Paw Patrol pup is. Whereas my autistic son can't tell me much more than what he did with friends in school today. And I use the term friends loosely, because while he does play with his classmates and respond to them if they lead the conversation, and nobody is mean to him, he really doesn't have what you'd consider a real friendship with anyone.

Op, I obviously can't diagnose your son, I can say your description is exactly like mine was at that age, and mine does have autism. So you definitely want to keep digging. The good news is, there's so much awareness these days that there are a lot of excellent resources put there, and the fact that he's already getting services will make a huge difference down the line. My son is doing really well and learning the skills he needs to manage in a neurotypical world. Dh is also on.the spectrum (but wasn't diagnosed till quite a bit older.than DS was) and he's functions quite normally as an adult (probably helps that he works in a field that doesn't require much social interaction and tends to have a high proportion of neurodivergent individuals). So it's really not the end of the world. As long as you make use of the resources available to you, it'll be fine. Challenging, but really fine.

imasinger

Thu, Apr 19 2018, 6:51 am

amother wrote:

I guess the truth is that whether or not his problem is called "autism" shouldn't concern me. It already is what it is regardless of what it's called.

This is a REALLY important insight, OP.

I think anyone on this thread who tells you it does or doesn't sound like your kid has ASD, based on how he compares to their kid, is forgetting how broad the spectrum can be. The standard line is, "if you've seen one kid on the spectrum, you've seen... ONE kid on the spectrum." (As opposed to, "if you've seen one, you've seen 'em all.")

The experts will tell you their opinion, and even experts make wrong calls sometimes.

Given that:
a) you have concerns about his ability to process the language he hears at least some of the time,
b) you say he may not be engaging with other children in an age appropriate way,

it sounds like speech therapy, and other therapies might be useful to him. And a diagnosis will make therapy easier to get.

One step at a time.

seeker

Thu, Apr 19 2018, 9:54 am

IMO it is really stupid for people to come on here and suggest whether or not OP's child has autism. First of all, she asked for help dealing with her fears that it *might* be, or dealing with her feelings of "what if." Secondly, you're not doctors and even if you were you've never met the kid. Combination of both: you're playing games with someone else's feeling. What does OP have to gain from this? Hope that may be false? Doubts whether her doctor knows what he's doing? Setting her fears more deeply by avoiding dealing with the possibility? Just stop.

@OP now:

1. It seems you already kind of know this, but the autism or ASD diagnosis has changed a lot since you first heard of it. It now includes a range of difficulties, such that many people who have the diagnosis don't look like they're functioning any differently than typical, or than a kid with some other issue like a learning disability that doesn't carry the same reputation. So don't panic - autism doesn't mean what it used to.

2. Your child will still be the same child you know and love, diagnosis or not. It doesn't actually change anything. You already had things you worried about - now you'll just have a better understanding of where they come from and how to deal with them, no matter what results you receive from your evaluation. There's no new panic button that will go off once the word autism comes up.

3. Nowadays, an autism diagnosis is commonly a pathway to therapy and services. Previously, kids who had these symptoms but weren't considered to be on the spectrum had a very hard time getting help. Now many more kids are included in the diagnosis. Say the word "autism" and people start practically throwing therapy at you. Kid doesn't seem to relate to different types of conversation? Ten years ago - try fighting for speech therapy but if they're talking at all and not failing school, you're paying out of pocket if you're getting it at all. Social difficulties? Nobody cares, again see if you can find a social skills therapist and pay through the nose. Now social skills therapists are everywhere, there are solid techniques, and they can often be funded by either health insurance or education departments (if you don't live in NY, consider moving. Seriously.) The kids getting the diagnosis are no different than they were before, but now they're getting help.

4. Relevant to the above, because more mild presentations are now included in the spectrum, I expect we will see a rise in kids who disqualify from the diagnosis after improvements. I have at least one student like that, he got the services he needed over the years but at this point even as a professional I'm surprised to see that diagnosis on his record. Another one is more borderline, you can still see some symptoms if you are a professional who's looking closely but if she were being evaluated today instead of four years ago before she got therapy, there's no way she would have been diagnosed. (both these kids are being reevaluated and I have high expectations. One might switch to ADHD diagnosis which is not really less challenging for the kid though it doesn't carry the same fear factor as "autism.")

FTR I see about a dozen kids each year and most are not Jewish so if any of my clients or colleagues are here on imamother, you have no idea who I'm talking about or I wouldn't be sharing.

amother

Periwinkle

Thu, Apr 19 2018, 11:26 am

I met an almost 4 yr old boy who barely made eye contact, couldn’t answer any questions, would only initiate a conversation if it was a topic he had a fascination with- and he would just repeat the same things over... I realized that he hardly ever smiled, laughed - ... as I watched him interact with his mother and I think that’s what the problem is... she never smiles at him, compliments him, she is always criticizing, giving him rules... no warmth at all - my point is not to say that you are like this mother but sometimes a child might look like there is something wrong with him when he is really fine , just some changes need to be made.

Zehava

Thu, Apr 19 2018, 11:36 am

zigi wrote:

what she said. I have one kid that was delayed bh with social skills speech therapy etc. is a happy well adjusted child and my son with autism the diagnosis helped him get his services, interaction isn't the only way to diagnos. skills can come and then go. he was a totally great baby but lost skills at 12-18 months. only clue was delayed in sitting standing etc.

And the child I know was advanced in every way. When his younger brother had delays and was getting services he was called in to serve as an example of how to accomplish various things like climbing through a pop up tunnel etc.
he is still perfectly fine physically but very low functioning otherwise.