Autism thread

My five month old son was conceived when we didn't have the faintest idea that my eldest might be autistic. I've asked my husband, and he's basically saying that if he'd known, he would have never had our second. I watch baby #2, but he's so different... i don't know. I worry, but I try not to worry, if that makes sense. Cross that bridge when I get to it, I guess, there's enough on my plate for now.

I'd guess a lot of you have seen this article from Salon by a professor of cognitive science at UC Irvine. It's an excerpt from his new book evaluating different theories of autism, favoring the "intense world" theory most. The style was surprisingly dense to be excerpted in Salon, I thought.

I've been reading a new-to-me blog, It's an advice column of sorts explaining social interactions from an autistic perspective. I think it's pretty good.

One of the questions on there was about sensory/chewy stuff for adults, and these sites were mentioned: (big archive, no longer active)

cross-posted in the autistic adults thread.

It's generally been on the quiet side here. Alex has adjusted well back to school, and is making incremental progress with social skills and potty training. A friend who is an autism researcher with lots of clinical experience noticed big positive differences when he saw Alex at a party about a week ago, such as more effective use of non-verbal communication.

As predicted/feared, it's getting harder and harder to take my son out in public with all of his unknowingly aggressive and dangerous behavior. Also he's leaving the cute stage where everyone cuts him slack.

Wife left the park crying with him yesterday because he tried to pull a girl's hair and wife wasn't fast enough to stop him. The girl's grandparents got annoyed and gave dirty looks and probably bad-mouthed them after they left. Really adds insult to injury seeing all these grandparents watching the grandkids since we have no family support around here.

I am seriously worried here. Little guy's gross motor abilities are maturing far faster than any cognitive or behavioral abilities (not saying much- they've been at a standstill for at least 1-2 years). I can really foresee a time that we're unable to take him outside the house without major stress. Wish I knew how to stop it.

So on Friday, we saw the neropediatrician who is supposed to be the foremost sepcialist on autism in the state. We waited two hours for a 45 minute appointment. It was nothing more, nothing less than what I expected. They want to schedule an MRI and an EEG, unsurprisingly, and of course, they'll have to sedate him. Oh goodie. But I expected it. She also didn't want to give us a definite diagnosis, but the words "PDD" were spoken. My husband is incredibly frustrated and very disappointed. He basically said that I could've prescribed the MRI and EEG, our family doctor could have. And when you think that we were initially supposed to see this specialist in April, it's all the more frustrating. Why not ask for the exams as soon as you ask for an appointment, and save time? Anyhow, it's all very frustrating, a lot of time is wasted. Matt will turn three in November, and we're not seeing any improvement. He's still at his home daycare, and only has two hours of speech therapy a week (which usually ends up being behavioral therapy) and whatever we can do ourselves at home. It's not enough. And it's just so frustrating to hear things like "why didn't you come to us sooner" when we're being told that the appointment for the MRI might not be before we move in November. We're basically told to have him declared handicapped so that the state can pay for everything. Sure, okay, fine, but pay for what? For services by people that aren't even trained? There's a center in Lille that does ABA and PECS therapies: there are 800 families on the waiting list. That means not months, but YEARS of waiting. That's just unacceptable.
The good news is that things are a lot easier between my husband and me since this appointment, we're actually talking to each other like civilized people and we're on the same page for Matt. We still don't know what's going to happen. It's not unlikely that my husband will stop working and train in order to help Matt. Or maybe my mom will, we don't know yet. But we know that we can't just sit back and wait for the healthcare system to kick in. Especially when part of this system is still convinced that the cure for autism is a psychoanalysis since the culprit is a poor mother-child relationship (seriously, wtf is up with that?).

Anyhow, I've gone on long enough, but I figured I should give you guys an update. This is where we're at. We've another appointment on Monday with the state run center, but I'm pretty confident that it won't help much.

And yeah, Gewy, I get it. I can't talk Matt anywhere if it isn't in a stroller, because I can't trust him not to run off into traffic... It's hard, especially when I have to manage baby #2 in the sling... *hug*

Sorry about all your frustrations Eleima. We never got an MRI here and the EEG we really had to push for. In the end it was his general pediatrician who ordered it, since the neurologist declined to see our son several months ago.

Anyway, we just got the EEG results: rare bitemporal sharp waves during sleep. I take this to mean he may have temporal lobe epilepsy. If not, he's certainly at high risk to get it later.

Now we're working to get in with neurology before the next available appointment in January. I expect he'll need an MRI. I think I'm going to push for anticonvulsant medication on the basis that seizure activity during sleep might be affecting his ability to learn, especially in regards to language.

Everything I've read about this is very uncertain and poorly understood, but it sounds like the prognosis for language improvement is not great at this point since the seizures might have started so young, before he developed significant language ability. This is all speculation of course, since, for all I know the abnormal EEG just reflects underlying brain abnormality and seizures are not the cause of his troubles. Hell, it could be a totally irrelevant, incidental finding.

Either way though, I'm going to feel guilty I did not push for the EEG harder earlier this year when I first thought it might be a good idea. Maybe that would have made a difference.

I should clarify. My son has not had any evident seizure that we can tell. I just wondered if he might be having "silent" seizures in his sleep which would be causing ongoing loss of skills shortly after he gains them. I was specifically worrying that he might have some kind of variant of Landau-Kleffner syndrome (essentially loss of language associated with epilepsy).

Well, I know why they're ordering the MRI and EEG, it's because they have a habit of differential diagnosis. I fully expect them to come back clean, but it would be less frustrating if they at least gave us some hints and pointers as to what to do in the meantime. Bad news is that hubby and I are at it again, which helps no one. *sigh*

I'd say definitely discuss anticonvulsant medication, Gewy, if there are sharp waves. And you're totally right, not all seizures manifest themselves in the "classic" manner that we see portrayed in the media and the like. Wait and see, of course, but if there's something on the EEG, anti-seizure meds should definitely be tried out.

Quick note to say "thank you" for this thread. I really can't work up the courage the post in the other parent threads, now, particularly the self-indulgent parent thread. Breaks my heart to see how far behind Matt is. Heck, even when MrDeVil cheers about his 4 month old sitting up, have a tooth, and rolling over, I'm reminded of my own 6 month old who can't sit up, doesn't have any teeth and doesn't roll over. I know that it can be explained because he's larger and taller (he's 8,25kg or 18lbs at 6 months), but still. I worry. Guess I was deluding myself earlier.

Yeah, I can't look at those other parenting threads either. I thought by now I'd be helping my son build Lego, going on fun trips with him, watching cartoons, throwing balls, teaching him to play games, etc. Now I'm pretty much doubting he'll ever be able to do any of that.

Although that said, it's often harder to see the more modest, yet harder fought, accomplishments of other kids with autism. I've said this before, but it's like the typical kids are from a whole different planet, and I no longer compare my son to them as much as I used to. But seeing my son left so far behind by all the kids in his therapy program... that's pretty hard for me to watch.

I'm okay with it now. Two years ago, I couldn't touch those threads, or this one, or really any conversation about parenting or disability without being overwhelmed with sadness over the things I wasn't doing with my son and likely would never be able to. The fact that he couldn't say my name, and very well may never, was heartbreaking.

But now I've settled into it, and I'm able to judge Jameson's accomplishments entirely on his own metric. I don't compare him to his peers, either neurotypical or disabled, or to my idea of what he would have been at this point if he hadn't have been disabled. I compare him to himself and take joy from the ways that he's advancing with his own goals. This morning at school, he hung up his own backpack (with prompting) and carried his talker to circle time and sat down cross-legged. That's a skill his classmates have mastered long ago, including other SPED students, but it's new to him today, and I want to throw him a party. However hard or easy it is for other students, I know it's a challenge for him and that he overcame it.

It's hard to let so much go. When he was born, I had this idea of watching Star Wars with him, building Legos with him, teaching him how to play Mario and taking him to soccer practice. At five, I still worry that Star Wars would be a little overwhelming for him or, more likely, wouldn't really register with him at all. He is coordinated enough to work with Legos and doesn't really understand what they are; he doesn't really "get" building with blocks. Nor does he understand video games or how to use a controller (or what you'd use a controller for) or the rules of sports. And it's been hard to trade all of that for what his interests are now: watching The Muppets several hundred times; mooing like a cow; playing with some Mardi Gras beads that his grandma got him at the dollar store.

But man, he tried to say "Muppets" the other day and got as far as a "Mupp-eh". Forget Star Wars and Legos and Mario and soccer and Saturday morning pancakes. My son, who cannot speak, almost said the word "Muppets". For him, that's harder and more significant than anything most kids do every day, and I'm overwhelmed with pride for him. I might not have been once. I might have been frustrated that he didn't say more or sad that after years of speech therapy, the best he can manage is a garbled name for a kids movie. But now I'm in a place where I recognize his accomplishment for what it is, relative to him and his abilities, and it's a good day.

My son has not had an MRI or EEG. Makes me wonder whether I should look into this.

gewy, I didn't know your son was having seizures. Could this be a factor in his sleep disturbances? I am really sorry to hear about the continued difficulties.

Eleima, thanks for the update.

Alex is a lot better now about not running off, but I definitely know where you two are coming from. About a year ago, we really had to be careful outside. And we have had to jigger all the door locks so that he can't let himself out.

AbsurdBaby is 16 months, but in terms of speech, he seems to have been at a standstill for the past 6 months. He babbles, and will say "dadadada," but no "mama," and certainly no other words. Sometimes, it sounds as he's almost saying a word, but not quite. My mother told me to relax, that he's trying to speak, and it's more than I did at that age. However, his pediatrician agrees with me, and has referred him to early intervention and a hearing eval.

I know 16 months is too soon for an autism diagnosis, but I'm keeping my eyes open.

Big hugs to all of you. Clock, your post is right on for me and stirred up many feelings of sadness as well as acceptance of where we are now. I am also proud of Jameson for saying muppet! That's wonderful!

Dee, keep an eye on your little one and post as you need. If I were you, I'd be doing exactly what you are now.

Alex and I finished the PCIT program last week. Something I've seen over and over in the reading I've done on autism is "behavior is communication." The training for PCIT, with the amount of attention given to observing and commenting on what the child is doing, really drove that home. I feel like my connection to him is stronger than it was before we went through the program.

My son's new interests this week: wearing striped shirts and watching people do toy reviews on youtube.

[url='s a post from The Thinking Person's Guide to Autism on financial/life planning for a disabled child.

This looks very interesting.

A pilot study found that early diagnosis and treatment of autism could reverse developmental and language delays in infants.

Thank you Clocky and Concentric. My brain gets what you're saying, but I just... I can't, I'm not there yet. I have a hard time accepting that no matter how much explaining and comforting there is, I'm going to have to strap my son down while he flails and screams so I can remove a single, tiny splinter.

I think I'd be more along the road to acceptance if something was actually being done, but at this stage, aside from the two hours of seppech therapy we've set up each week... Nothing. And it's even more galling to see things are moving do slowly when the neuro had the guys to ask why we didn't come to see her earlier.

It's just really frustrating.

Dee, fingers crossed for AbsurdBaby.

My daughter will be receiving speech therapy through Early Access. I'm pretty confident that she's not on the spectrum. She's much more engaged than her brother and responds far more readily to others. She's a bright and curious little girl.

I'm glad she'll be getting the help she needs, however. The speech pathologist based her decision both on my daughter being a bit behind in terms of imitating words and the range of sounds she makes, but also due to family history. The speech pathologist worked with my son, so my daughter will be in good hands. I'll be consulting my son's speech therapist to see if private therapy is warranted.

Good to know she's in good hands. With her brother on the spectrum, it's provably a good thing that you're not taking any chances, even if you're certain she is not. Can't hurt, right?

concentric wrote:

Big hugs to all of you. Clock, your post is right on for me and stirred up many feelings of sadness as well as acceptance of where we are now. I am also proud of Jameson for saying muppet! That's wonderful!

Dee, keep an eye on your little one and post as you need. If I were you, I'd be doing exactly what you are now.

Alex and I finished the PCIT program last week. Something I've seen over and over in the reading I've done on autism is "behavior is communication." The training for PCIT, with the amount of attention given to observing and commenting on what the child is doing, really drove that home. I feel like my connection to him is stronger than it was before we went through the program.

My son's new interests this week: wearing striped shirts and watching people do toy reviews on youtube.

[url='s a post from The Thinking Person's Guide to Autism on financial/life planning for a disabled child.

Funny you mention the youtube thing. Owen has been watching videos of people reviewing Thomas toys for a while now, strange.

El-Producto, I think if our kids were ever to meet, they'd have a fantastic time together!

Eleima, thanks for the support. I have to be careful about not putting unfair expectations on my daughter. I am more consciously applying the techniques I learned for my son, with some good results. She got a pair of shoes with puppies on them recently and is so thrilled with being able to wear them: "Puppies!"

Awwwww, that's so adorable!!! I totally get the "unfair expectations" thing, if it's any comfort. I do the same with my number two...

So news from our front, we got the melatonin and having being slipping 2mg to him before bedtime for two days. It's too early to tell, but it does seem to help with bedtime... The true test will be tomorrow when his dad comes home late (9pm, usually means he's up until 11pm).

The Early Intervention eval was today. AbsurdBaby definitely qualifies, as his communication skills are definitely not up to snuff. This surprises me little. Hopefully we can get him on track so he can communicate and be less frustrated.

Sorry to hear that Dee. Are they only worried about his communication skills? Or are there are other things that worry them? Many many hugs.

I'm also sorry to hear that he needs the help. Hearing it from an expert is very tough. Still, I am really glad that Early Intervention exists. It's benefited my son so much.

ETA: it's really great that you are addressing this now. The better the child can communicate, the less frustrating for EVERYONE.

I'm not sure sympathy is needed so much. We already knew his communication was a bit behind where we'd like it to be, and that help would be useful. Qualifying for this means we'll be able to afford that extra help. His frustration levels are mostly low right now, as his wants and needs are usually easy to read even without language (i.e., when he's hungry, he wants food, he's not picky about what it is, when he wants to drink something, its either water or milk, so not a whole lot for us to misunderstand yet) ... but I suspect thats beginning to change already and not having the words would soon become a problem.

Everything else the assessed on was in the 'normal' range.

It's only the communication that they're worried about; he's on target for everything else. I was actually worried that they would tell me that he didn't qualify for services. There's a bit of a gap. If a kid scores between 1 and 1.5 standard deviations below the norm, then it's a delay, but not enough of a delay for services. (Makes a ton of sense, right?) I'm very glad that we can get him started with services; I truly believe the sooner, the better. I might have had an easier time of things if Early Intervention existed in the early 80s.

I'm sorry if I seem to be monopolizing the thread with stories of my undiagnosed child. Do we have a general kids with disabilities thread, or somewhere more appropriate for this kind of thing?

Absurd-hausered! WTF? He's literally three feet behind me!

I don't think you're monopolizing this thread at all. You have concerns and this is a good place to share them and get support.

The point about this help being free is so true. That's a really good thing. I wish that it kept up like that. Here the amount of free help available changes for the worse once the child ages out of Early Intervention. A lot of children who need the help don't get it without good medical insurance.

About the cutoff: I'm sure it is justified somewhere, and I don't have the knowledge to understand it. The fight we're having with our insurance about Alex's speech therapy coverage is whether he's more than one standard deviation below the norm (he is, most definitely), but they're being really difficult about acknowledging that.

I agree, you aren't monopolizing the thread at all.

I like the idea of a thread for parents of kids with special needs.

You're not monopolizing...

I'm thinking maybe I should just change the thread to Autism and Other Special Needs Parenting? There's plenty of overlap in experiences and issues I would think, and I'm not sure there are enough posters on the subject to warrant a separate thread.

Any thoughts?

Some random updates/issues:

I like to talk about our son and get support online, but that doesn't really work for my wife. She needs "real life" people to talk with. Unfortunately the only support groups she's found around here are very religion-focused, specifically Christian. She feels very awkward when they're discussing "God's plan for us" and similar stuff when she's pretty much an atheist. It also hurts that most of the other kids she knows are much better off than our son. She's feeling very isolated and lonely.

Also, my son started playing with his poop for the first time this weekend. We weren't paying close attention to him for five minutes and he had a bowel movement, dug it out of his diaper, and got it all over some furniture, his face and clothes. He ate some of it unfortunately. Wife freaked out.

He also got sick and threw up in bed this weekend. Rolled around in bed and it got all in his hair.

And every meal is a messy disaster.

We're very depressed about this stuff. If we had any confidence that this was "just a phase" it'd be no big deal. Unfortunately since little guy seems very much stuck at around a 10-12 month level developmentally, I could see us going through this still when he's a teenager. It's one thing to clean up after a three year old, but that's another thing entirely. Best not to think about it I guess, but hard not to.

Oh Gewy. All the hugs. I know what you mean, it's not to think about how we're going to deal with it when they're older, and stronger. And I have zero advice for you, unfortunately. We'll cross that bridge when we get to it, right? Some siblings of people with autism have troubles as adults

gewy, all the hugs from me too. I hope that your son is like mine, where he did what your son did only a couple of times. I remember wondering if we would end up using duct tape on him to keep his hands out of his diaper.

And I grew up in Alabama, so I definitely understand how hard it must be for your wife.

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