Autism thread

Not sure if anyone here are Radiolab listeners, but the latest episode is on Autism. Ironically, the focus of the story is a boy named Owen, I think the original article was mentioned previously in this thread.

My wife and I are about to go on a vacation for 11 days for the first time without Owen, so I'm not sure I'm ready to listen to this yet as I'm feeling a bit emotional about leaving the little guy (he's with my parents and will be fine).

http://www.radiolab.org/story/juicer...

As a long time listener of Radiolab, I know it will be wonderful and sensitive to the subject matter. I just think I will listen to it when I get back.

El-Producto wrote:

As a long time listener of Radiolab, I know it will be wonderful and sensitive to the subject matter. I just think I will listen to it when I get back.

You're on vacation, so I don't want to spoil it for you too much... don't read the article until you get back!

For the rest of you:
An Open Letter to RadioLab: Stop Your Dangerous Autism Reporting

I was bored last night and couldn't sleep so I read the article.

Guess I should listen before I recommend, but I'm going to reserve judgement until I actually hear it. I've listened to every episode of the podcast, and they've never treated their subject matter with anything but the utmost respect.

Thanks for the link!

I listened to that Radiolab a few days ago and just read that article. I have no first-hand experience with autism but have been following this thread because I'd like to understand it better. All my opinions are spoilered in case you want to skip over them.

Here is my non-parent opinion:

Spoiler:

I agree with the article. As much as I love Radiolab, this was a really odd program. I went into it really excited because I was hoping to come to a better understanding of what autism is, and I didn't come out of it with a better understanding at all. They did succeed in explaining that autism is very complex and people have very different views about all the different facets of it. We already knew that. I guess as someone without any first hand experience, the program did educate me on a couple very specific situations. So, I got a little bit out of it. As the article points out, anyone with first-hand experience has already heard those stories. I learned more reading the article than listening to the program.

I found the comment by Mr. Suskind about how he greets parents with autistic children to be one of the most naive, irrational, unrealistic, one-sided, and narrow-viewed comment I have ever heard. It just completely ignores the complexity of every unique person's situation. For a second, I thought I was listening to something from Fox News. Fortunately, they did give another person's opinion on that comment which is exactly how I would expect a rational person to react. That comment should not have been on the podcast. I get kind of mad and sad just thinking about it. "No one's every said that to me before." I wonder why!?!

That's my gut reaction, and if I'm off-base with those feelings, I would definitely appreciate being corrected. I would like to have a better understanding of autism and how it affects people's lives.

I ran into the psychologist who diagnosed my son when I took my kids to the dentist yesterday (the autism center and pediatric dentistry are in the same building). We had a nice chat. She'd asked me for some input for a presentation she made at the national PCIT conference last week, because my son is one of the few in this area who have done both PCIT and Project ImPACT.

Her talk went well. It was aimed at PCIT providers who might have children with milder autism symptoms as part of their caseload. What she's researching is the usefulness of PCIT for such children, in part because PCIT is much more widely available than ABA therapy. I think it would be fantastic if this strategy helps more children on the spectrum.

What I'm looking into now is what sorts of formal supports are available for autistic students where I work. I am doing some one-on-one work with a student who may be on the spectrum, and I'd like to see him and others get what they need while they study here. Any advice would be welcome.

ETA: I talked to someone in the dean of student life's office about a neurodiversity group. They've tried it before: nobody showed up! Somehow, I am not surprised.

2 nice pieces of news: speech therapy has been authorized by our medical insurance, and my son has his first-ever friend, a 3 year old boy at daycare.

Another addition: Alex is also making a friend at school. Things are coming together for him. I hope that these blessings carry over to your families as well. I am always thinking of you all.

That's awesome news about friends!

Jameson has been making a couple friends in Kindergarten, too, and last night he actually said a word: "apple". He even repeated it when asked, and used it to correctly identify both a picture and a real apple. I'm so proud of him.

So happy about Jameson! That's such good news!

ClockworkHouse wrote:

Jameson has been making a couple friends in Kindergarten, too, and last night he actually said a word: "apple". He even repeated it when asked, and used it to correctly identify both a picture and a real apple. I'm so proud of him. :)

Awesome news.

That's really great news, Concentric and Clocky! It's great to see our kids making progress, and I have to admit that reading that Alex made a friend kinda left me teary eyed.

It's been a busy week for us. On Tiesday, Matt was hospitalized for some tests. They had us come in at 8:30am, had to draw some blood (that alone was a nightmare, he was so scared ). Around 11:30am, there was a consult with a geneticist, and then the EEG at 1:30pm. I just wish we'd done all this as an outpatient. Waiting around in a hospital room is NOT good for Matt. The EEG looked clean, at least.
On Wednesday, we had his eval at the Regional Center for Autism. My husband was there and the day went really well. A speech therapist, behavioral therapist and an educator were there to observe Matt and question us about him. They had the entire day dedicated just to him, which was super comfortable for us, but when we think of the horrendous delays to get an appointment... They kept telling us that Matt was still young and that we'd taken it early, but everything inside us was screaming that we were late and that we had to go faster, do better. Final results will be in a few weeks but they said he didn't seem to have any intellectual disability. Which we hadn't really doubted, I mean he's taken to the iPad really well, knows how to navigate it a bit and plays Fruit Ninja, but it's still nice to hear it.
Last night, my husband and Matt left on a plane for Paris to get another eval next week. I do not envy my husband. I was watching them as they waited to pass through security, Matt was squirming and generally not doing well with the change in routine and scenery. I'm staying home for work (I'm a bit behind on my doctoral thesis, my boss is going to murder me) and baby number two is a lot easier to handle, no doubt about it.

Anyhow, sorry this was a bit long, but I wanted to keep you guys posted. It's a bit crazy on our end with the move at the end of the month but at least things are moving forward.

Eleima: no sign of any intellectual disability is very positive. My fingers are crossed for the additional testing. You and your family are going through a lot right now, and I wish you strength through all this. It must have been hard for Matt to deal with the new environments. Alex had a very difficult time the day he was diagnosed for the very same reason.

Thank you, Concentric. Hubby and Matt arrived safely, and everything is going super well, apparently. They got him a table and chair to set up a "work space" in his room in my parents' house. He's doing surprisingly well, despite the change of scenery. I'm guessing it's because he remembers the house from our trip back in June. In any case, it bodes well for our move in November (we'll be staying at my parents' home until we get our bearings, and they'll be away anyhow). I have to admit, I'm also a bit relieved to get a break myself. I love my son, but juggling him, work, his younger brother, the move, selling our cars, deciding whether or not to accept a job offer, writing my thesis... I get overwhelmed a lot these days.

Happy to say, my wife and I returned from a 12 day vacation in the UK and Ireland, and Owen did fantastic with my parents. He slept from 8pm-8am straight every night (with my mom), and even began peeing on the toilet every night before bed!

At one point in the week he asked my mom where we were, and she said we were on a trip and would be back in a week (we had told him nothing assuming he wouldn't understand), and his response was - "ok, cool". That was the last he wondered where we were.

So proud of him.

That's great!

We started our son's seizure medicine (trileptal) a few days ago. The neurologist thought it wasn't a bad idea to try it given his EEG abnormalities. I don't get the impression that the odds of dramatic improvement in language acquisition or other skills are too high though. Still, with our son approaching 4 years old and not having made a lick of progress for 2, if not 3 years, despite intensive behavioral therapy... I'm thinking the next year is pretty much his last chance to turn things around and avoid a diagnosis of intellectual disability and permanent, severe language deficits. Maybe I'm being pessimistic, but I think it's a pretty realistic assessment of where we're at right now. Kind of feel like we're about to throw the hail mary pass in the final seconds of the game, to use a lame sports analogy.

In other news, our son has developed a new, frustrating habit. Instead of drinking all of his juice, water or whatever, he will suck a lot of it up and just let it drool out his mouth. We're having to change multiple shirts per day as a result. That's annoying, but it's also discouraging because we've been giving him his medications dissolved in Sprite. No telling how much he loses that way.

He just keeps developing new, difficult behavior at a rate that far, far exceeds any progress he makes. Time to up my Prozac I guess...

Gewy, I wish I knew what to say. It must be so incredibly hard for you guys. I wish there was something I could do or say, but know that we're here if you ever need to talk. It's exhausting, those new habits popping up, the extra washes, smuggling the medication... We used to put Matt's melatonin in his yogurt (and he ALWAYS has a yogurt in the evening), and inexplicably, now he won't eat it.
Anyhow, sorry for that tangent, what I wanted to say is that I don't if it will be of any comfort, but I'm thinking of you guys and I'm here if you ever need to vent. Anything else I'd say would probably fall flat. *hug*

Thanks Eleima. He's slacking off on the drooling some. Still doing it, but maybe the novelty is already wearing off for him. Hard to predict though. A lot of times it seems he gets bored with a bad habit then he randomly starts it up again.

I think some of the best advice we ever got was - to avoid making a big reaction to unwanted behaviour. My son will "flog a dead horse" if we react to his "antics." I found/find it difficult, but trying to maintain a bland, almost bored, demeanor seems to avoid his "endlessly repeating" act for things you'd rather not see/hear again.

I say this knowing full-well that this is ALL anecdotal, and not worth the paper it's printed on ("Look Ma, no paper!")

I'm with Wink on that one. My mom has been minding our son while he's in Paris with his father for some tests, and she's been "not looking" as he eats and when he does stuff to get attention. And eff me, but it's working. He's eating better than he ever did at home (even though we lovingly prepare homemade, homecooked meals, he preferred the store bought puréed stuff) and he's throwing less tantrums. Both my mother and my husband have asked me if it wouldn't be better for him to stay at my grandparents until we complete our move at the end of the month. It would mean less changes in his routine, and he's doing so well. Selfishly, I don't want to not see him for a month, but everyone seems to say it's best for him...
Today's an off day for me. I saw a friend yesterday who just had baby #4 and her #3 is 2 and was at home. She was playing make believe and talking up a storm, and just generally doing tons of things I know Matt should be doing too, at least that's all I could see. And as I was driving to drop off our youngest at daycare, I started thinking I'd give anything to hear Matt say "I love you, Mommy." Heck, even "I hate you, Mommy." Anything really. Ugh, sorry for being so mopey, but I guess I have good and bad days, and this one is one of the latter.

I empathize deeply with you, Eleima.

My sons are with me full-time now, but a few years ago I had to get them away from my ex and a very toxic situation in North Carolina.

Cue my parents moving to Utah for my dad's job and they want to take my boys with them, since they saw how their living conditions were pretty rough with my ex. I was able to talk my ex into letting the boys move out with them, but I was without my sons for the better part of a year and I was going a bit mental toward the end, until I moved out there with them all to finish up some tech training.

Long story short, it was the best thing for the boys and I would do it again in a heartbeat, just to make sure they were in the best situation possible, letting my "selfish needs" become secondary.

I don't truly believe that those are selfish, but incredibly normal feelings.

Thank a bunch, Cartoonin, I needed that. I've done a but of pondering since the subject was first broached and if it's truly best for him... We're waiting to hear from some ABA specialists that work not too far from my parents, and that will definitely influence our final decisions, but in the end... It's only a few weeks. The better part of a year, wow, I don't know if I could. Like you said, I'd go cuckoo.

gewy: like Eleima, I am always thinking of you and trying to say something helpful. I think even the most zen person would be stressed and frustrated with your son's challenging behaviors. But I always admire what you are doing, and so glad that you and your wife are supporting each other through this. That's huge.

Eleima: it's really hard not to compare our children to others', isn't it? And then to judge oneself as a parent based on it. But you are a wonderful mother who is so clearly going to do anything that's best for her children. I would miss my son terribly and feel inadequate hearing that he is seeming to do better away from me. I agree with cartoonin99, that your feelings are normal. Maybe your parents are in a situation where it's just easier to have less distraction and more routine at this point? With everything you've got going on now, it really may be a helpful short-term solution. Facetime or Skype can really help too. My son kisses the iPad screen when he says goodbye to his grandparents who live in Georgia. However Matt is able, he will communicate his love for you.

Positive behavior reinforcements (meaning ignoring, with limits, what you don't want the child to do) really do work, but they take patience and time. Believe me, that is something I could not have implemented effectively without outside guidance.

So it's been decided, my eldest won't be coming back. I'll miss him for this month, but it'll be easier on him and on us for the move and my thesis I need to finish writing by the end of the month.
He's started ABA, and while everything seems to be going smoothly, there is something that really, really, really bugs me, and I needed feedback on this. The professional that does the ABA sessions usually tapes either when she's working with Matt or when she's talking with my husband or mother. I'm okay with that up to this point, I understand she needs to document what she's doing, send stuff back to her supervisor in Holland (because they're few and far between in our neck of the woods). Okay, I don't like it, but fine.
This is where I'm not onboard anymore. To share the videos, they upload... to YouTube. So sure, the videos are unlisted, but there's a big huge "share" button from which you can toss it to any social network like FB, Twitter, G+, whatever. I'm highly uncomfortable with this, it's **YouTube**. Heck, I don't even post pictures of my kids on FB. From FB, you could barely tell I have children. Not to mention she uploads everything in HD so she complains it takes forever. Not exactly tech savvy, I gather.
I get the why, but I'm really, really not liking the hiw, and I want to protect my kid and not have tons of videos of him stored somewhere on the internet... Opinions? Because obviously, my husband and mother haven't said anything, so that makes me the security-crazy control freak.

From an online security standpoint, that's a problem. I don't know what the legal guidelines are there with regard to patient information, but I doubt posting therapy sessions to YouTube, even if they're unlisted, would pass muster in the US.

Is there no French HIPAA (health privacy law)? Can't they at least use a cloud sharing service instead?

Does not seem legit.

Is there any way to secure videos on Youtube? I took a class a few years ago that used Youtube to view videos that were password protected. I could dig up the details if you are interested. But I would also feel uncomfortable with that situation.

I know you will miss Matt! I would have a hard time without either of my children for that length of time.

sometimesdee wrote:

Is there no French HIPAA (health privacy law)? Can't they at least use a cloud sharing service instead?

There absolutely is, and that's the first argument I brought up (it's kinda my job to know health laws and anything that'll protect the patient).
Thanks for giving me your feedback, gang. I'm relieved that I'm not the only one finding this off. I'm going to speak to the therapist about this, because I never gave my consent, even if my husband and mother did.

To tell the truth, Concentric... I miss him, but I'm almost relieved to have some time apart. In French, another way of saying ASD is trouble envahissant du développement, meaning invasive behavior disorder. And that's exactly it, it's invasive, it takes over every aspect of your life, and I'm genuinely worried that I'm not equipped to deal with it. This month really has me thinking whether or not he's better off without me, because he's just doing so well. And I'm just terrified of what November will bring, intensive ABA sessions in which I'm going to learn how to act and guide him, and I'm just so worried that I'm not going to up to it. These past few months, even now when it's just me and the little one, there are times I just can't do it anymore, I just can't, and I shut down. Maybe it is best for Matt for me not to be around. Sorry for the maudlin post, today's an off day, perhaps.

Eleima wrote:
sometimesdee wrote:

Is there no French HIPAA (health privacy law)? Can't they at least use a cloud sharing service instead?

There absolutely is, and that's the first argument I brought up (it's kinda my job to know health laws and anything that'll protect the patient).
Thanks for giving me your feedback, gang. I'm relieved that I'm not the only one finding this off. I'm going to speak to the therapist about this, because I never gave my consent, even if my husband and mother did.

To tell the truth, Concentric... I miss him, but I'm almost relieved to have some time apart. In French, another way of saying ASD is trouble envahissant du développement, meaning invasive behavior disorder. And that's exactly it, it's invasive, it takes over every aspect of your life, and I'm genuinely worried that I'm not equipped to deal with it. This month really has me thinking whether or not he's better off without me, because he's just doing so well. And I'm just terrified of what November will bring, intensive ABA sessions in which I'm going to learn how to act and guide him, and I'm just so worried that I'm not going to up to it. These past few months, even now when it's just me and the little one, there are times I just can't do it anymore, I just can't, and I shut down. Maybe it is best for Matt for me not to be around. Sorry for the maudlin post, today's an off day, perhaps.

I definitely understand the relief of having time you can control more easily, even with an infant in the house. It's hard. I hope you don't doubt yourself too much as a parent due to your situation. You and so many others who post in this thread are under so much stress, and I think many of us, including me, are just barely managing to keep our heads above water. I remember one day when I realized I had forgotten every PIN for my accounts, for example. Hugs to you.

ETA: I just found a webpage with a lot of good suggestions for proprioceptive input.. Things like weighted blankets, having the child carry something heavy in his/her backpack, etc.

Sorry I haven't checked back, but things are pretty intense on my end with the countdown for both my thesis and the move firmly in the teens. Many, many thanks for your post, Concentric. You're wise as always, it is indeed hard to keep moving forward when all you want to do is curl up in a ball sometimes. Anyhow, I'm taking it one day at a time, Matt's doing great, so I'm going to keep at it. Thanks to all of you for being there when I need to vent or voice my moments of despair.

Eleima, I'm so glad you are on GWJ, because I think of you as always having such constructive things to add. Just keep moving forward!

I just saw this article in the NY Times about getting dental treatment for children with autism. Lots of practical advice. We have a pediatric dentistry program attached to the Center for Disability and Development here, so fortunately it's been easier for us to get our son care than many of the families mentioned in the article. I like the emphasis on getting the child accustomed to the environment prior to treatment. It's slow, but does work.