Autism thread

gewy, you and your wife are wise to realize that there is a limit to what you are able to do. I agree with dee: look into respite care. When I get the notes back from Alex's late April appt., we'll be starting the application process for a Medicaid Disability Waiver, which provides funds for respite care.

I also happened to come across a link that may or may not be useful for you:

A Checklist for Identifying Sources of Aggression

FSeven, thanks for letting me know that your son did this as well. It is heartening information.

Wow, that whole site is pretty right on. This was interesting there too.

I think I would be ok with being that token friend for parents.

There are so many things I read and hear about, here and other places, that seem completely self-evident to me but are a mystery to the parents! I'd love to be able to help clarify those kinds of things somehow. But you can't just go around explaining stuff to people who aren't asking... ah, there's that situational awareness thing that got me downvoted from actual Asperger's again

With my son's aggression, I am almost 100% sure it is sensory-seeking. He hits everything, whether he's happy or appears distressed. The problem is the only activities we have found that calm him down (swing, spinning, rocking chair, car rides) are losing their effectiveness and he can't do them independently. He just goes back to sensory seeking afterwards. So a sensory diet hasn't really fixed the problem.

My son's also a sensory seeker. He will crawl all over us, head-butt us, grab us, etc. It's exhausting, isn't it? He has a hard time controlling himself and we have a hard time redirecting him. We do find that when he spins, he is less likely to crash into us. I wonder if there are ways that something could be rigged up for your son.

Vent away, gewy. This is a tough road.

clover wrote:

Wow, that whole site is pretty right on. This was interesting there too.

I think I would be ok with being that token friend for parents.

There are so many things I read and hear about, here and other places, that seem completely self-evident to me but are a mystery to the parents! I'd love to be able to help clarify those kinds of things somehow. But you can't just go around explaining stuff to people who aren't asking... ah, there's that situational awareness thing that got me downvoted from actual Asperger's again :D

You're pretty right on too, clover. Thanks!

Helmet's here finally.

The good news:
It doesn't seem to bother him
It does seem to reduce his head hitting when on.

The bad news:
It's huge and looks atrocious.
He can easily take it off on his own.

Other news: little guy woke up at 2 am last night and has been up since then.

Finding a therapist to test me, when I have pretty hardcore anxiety issues with using the phone, has been hell. I had to call my insurance company to find out that the reason I wasn't able to find network providers in my area on their site was because I was using Chrome, and the site was built for IE. And every provider I've called since getting a list from my insurance, doesn't take my insurance.

Waiting for a few to call back, because leaving a message has been the only option for a few of them. This really sucks.

PurEvil wrote:

Finding a therapist to test me, when I have pretty hardcore anxiety issues with using the phone, has been hell. I had to call my insurance company to find out that the reason I wasn't able to find network providers in my area on their site was because I was using Chrome, and the site was built for IE. And every provider I've called since getting a list from my insurance, doesn't take my insurance.

Waiting for a few to call back, because leaving a message has been the only option for a few of them. This really sucks.

Here's a list of therapists in Columbia, MD who say they deal with autism. You can also narrow it down by insurance provider, but yeah, I've found that most therapists don't take insurance at all.

Yeah, I gave up on that site. I found one person on that list that took Tricare, but she wasn't accepting new patients. The rest of the ones I called that listed Tricare as an accepted insurance, didn't accept Tricare. Which is about the same results I'm getting from going directly through Tricare's site to find a networked provider.

I'd say that your problem is with Tricare, then. Which is a shame, because we should be treating our troops so much better.

Oh, Tricare is good for things I can do at a military treatment facility. The problem is, the MTF's for psych in this area ONLY see active duty, and even though my wife pulled some strings and got me seen at one anyway, I didn't really trust the person they put me with (well, I trusted one doctor before she got deployed, the last guy was an asshole). I brought a copy of the RAADS-r that I took online, and he completely dismissed it (I scored a 196). I stopped going after that. I know an online test isn't a diagnosis, but I was basically asking to be tested, and well... yeah, that wasn't going to happen.

The problem is that my wife was pushing me into being treated for depression for years, and that's what this guy was seeing me for. I've had low times in my life, and I've had suicidal thoughts over the years, but once I learned about the symptoms of Asperger's everything just clicked. All those years of being frustrated in how things worked out, and feeling completely inept with other people... it just made a ton of sense. And I haven't really felt low since. A lot of the time now when I have something happen that makes me anxious, or frustrated, or puts me into a flight response, I actually know why, and I'm more prepared to allow myself time to calm down.

I just don't feel broken or crazy any more. And I'd like to have a doctor tell me that I'm right, or show me why I'm wrong.

Unfortunately, it seems extremely difficult to get a diagnosis as an adult. From the books I've been devouring, it seems that most people who got diagnosed as an adult had to go through many doctors, and ended up paying out-of-pocket. I don't know what I would have done if I weren't already diagnosed as a child. I totally understand the feeling of realizing the cause of things. For me, it's the feeling of "I'm not some sub-human freak; my brain's just wired differently!"

Well... I have an appointment, but it's not until the end of July. It was either that, or mid-way through August. I figure I'll keep looking for something sooner, but at least I have something booked.

It turns out we were premature in allaying our fears about how our son will do in school. How naive of me, right? This never goes away...

Yesterday was a "Meet and Greet" at the school where my son will be starting kindergarten in September. The incoming class gets divided amongst the different classrooms and teachers and it's a chance for the kids to see where they will be going in September as well as meet some of the other kids and teachers. The kids all sit at the desks and the teachers ask them questions and interact with them. My wife stayed out of sight in the hallway and periodically looked in to see how he was doing.

First, he is much smaller than the other kids. Emile looks like a 2-year old standing next to them. I hope it's just a sign of my family's genetics (we were all rail thin and slight build with the metabolism of hummingbirds but grew into average 6 footers) as opposed to my wife's (her father was 5'5" and had a Napoleon complex). My only concern here is bullying. Kids tend to pick on those smaller than them, right? I didn't want to have to teach my son to defend himself (delusions of a perfect childhood?) but it looks like it may be a necessity.

Second, while all the kids were sitting on the floor at one point listening to the teacher, my son was looking all around the room and virtually ignoring the teacher. My wife said the other kids were looking at him like, "What are you doing kid? Pay attention." It's no secret that my son is easily distracted (hints of ADD). I can only hope it's a case of him needing to absorb his environment and feel comfortable in it before he can focus on something else.

So it looks we're back on the worry train. Fun.

FSeven, does your son have an IEP? A visual schedule and a para educator assigned to my son have helped out a lot in keeping him integrated and involved in class activities. Another concern was social interaction, and they have started him on the STAR program with some success. He is definitely making progress but still working towards goals.

As for bullying, that will be on my mind as he gets a little older. Right now, in preschool, it is not a major concern.

BTW my son is in a mixed classroom, with most of the students developing typically.

Give your son some time to adjust when the new school year starts too. Something we did during the summer was visit the school and classroom so he could become familiar with the physical environment. We also got a schoolbus toy (Melissa & Doug) so he could understand that routine in advance. For some reason he had no problems at all with the bus, but staying with group activities in class is still hard for him. But he's only just turned 4 and has made great progress in so many ways.

PurEvil, that is good news. I'm sorry to hear about, but honestly not at all surprised by, the wait. We are still waiting on notes from my son's last appointment with his psychologist, on April 24. And I had to wait 2 month from scheduling to the appointment itself.

Hello gang, hope you don't mind if I join the worry train, even though (and don't take this the wrong way), I really, really wish I didn't have to.

As I hinted in the loathe thread, we're worried about our son. Matt is two and seven months, and he's just not progressing any more. He used to be able to say certain words, but he doesn't say those any longer. He doesn't always make eye contact with people he doesn't know, and doesn't play much with other kids. He's currently in a home day care, and he sometimes needs break from playing with the group, going off in his own little corner, apparently. He's still an adorable kid, very affectionate with both me and especially his father. But he doesn't do so well with new people. He most definitely isn't potty trained, even though I've had a few successes. When frustrated or disappointed or angry, he'll throw huge fits, flailing around, screaming. I came away from such a fit with a split lip a month ago.
We were traveling this month and saw family we hadn't seen in a year. I had had my doubts in the past couple of months (which my husband dismissed), but it became glaringly obvious that something's up when we saw the other cousins that were six months older or younger than Matt. It was a huge shock to my husband and he's still adjusting. We both are. The other kids are just light years away from where he is. Not to mention that the trip and moving around so much from one grandparent to the next made him a LOT worse. He's started biting his fingers.
In a way, a diagnosis would be some kind of a relief, particularly if it comes with a road map, because I'd been struggling so hard with parenting lately, and have pretty much convinced myself that I'm a bad mom. This is going to sound bad, but it's almost a relief to realize that it's not supposed to be this hard.
So here are, at the very beginning, getting appointments, and trying to get every scrap of help we can for him and for ourselves. No diagnosis yet. Some part of me is still hoping that it's some bad reaction to all that's been going on lately. His father and I have been having major issues in the past seven months, we're still working through them. His little brother was born back in March. And I'm wondering if I haven't been suffering from some mild form of post-partum depression these past two years.

Sorry to barge in here and start dumping it all, but it's been really hard, I'm not coping all that well, and well, GWJ has always been such an awesome community. So in a weird way, I find it comforting to find you guys here and know we're not alone. And it's great to see all those smiling faces in the pictures.
So here I am: hi, I'm Eleima / Emily, and I think my son might be autistic.

I don't think I've ever posted in this thread before /lurker

Just remember that autism is not a "death sentence" - he will just be different, and there's nothing wrong with that.

Our son's diagnosis opened the door to therapy (physio, speech, etc) and extra help in (and for) his school (he's had a full time para since grade 1). We have regular meetings with his teacher and social workers (every 2 months); where we go over strategies in dealing with inappropriate behaviors (he can get violent when overwhelmed), and get updates on how he's doing academically (he lags behind his peers in many ways, but can surprise you in his "interest" subjects).

He's starting grade 6 next year, OMG!

(I'm pretty sure he gets it from me, in that I've found much of his diagnoses felt verrry similar to my own experiences growing up. So I probably would have fallen in the "high functioning" end of the ASD scale had I been born much more recently (instead of, nearly, 40 years ago.))

For completeness sake, he takes Concerta (ritalin), and Risperidone (for the rage). I was worried, when he was first prescribed, that he'd end up like some drugged up zombie, but it doesn't change him at all - it just helps to level out the "extremes".

Welcome to the club. Sorry you had to join though.

I wonder how much of it is regression because of the new baby, and how much of it is something else. Either way, Eleima, I hope you get answers soon enough so you can figure out what to do. I also hope you get some help for yourself, as you can certainly use the support. Being a doctor, wife, and mother of two cannot be easy!

Eleima, glad to see you here. A lot of the things you say about your son sound similar to mine at that age. That's not a diagnosis!

You're doing the right thing. It is really stressful and hard, in addition to the stresses you already have with a toddler and infant. Keep working on things with your children's father - everyone will be better off if you can work as a team. My husband and I have had to learn how to do that.

You're not a bad mother! Something about parenting that I have to keep reminding myself of is that I have a lot less control over how my children are than I would like.

I saw this a couple of days ago in the NYT, and found it a real comfort: The Trauma of Parenthood. Maybe it's too centered on American culture? I don't know.

Wink, I'm glad you are here too.

I've been reading John Elder Robison's book Be Different and it's been very helpful. I like having the perspective of an autistic adult looking back at what's helped him through life. It confirms many of the decisions we've made with our son, especially with focusing on social language and routines. He can choose to employ those tools as he wishes as he grows up, but I'd much rather he have them than not.

Eleima wrote:

He used to be able to say certain words, but he doesn't say those any longer. He doesn't always make eye contact with people he doesn't know, and doesn't play much with other kids. He's currently in a home day care, and he sometimes needs break from playing with the group, going off in his own little corner, apparently. He's still an adorable kid, very affectionate with both me and especially his father. But he doesn't do so well with new people. He most definitely isn't potty trained, even though I've had a few successes. When frustrated or disappointed or angry, he'll throw huge fits, flailing around, screaming. I came away from such a fit with a split lip a month ago.

Your son is showing pretty much the exact same issues that my son showed when we got started with all this. They're about the same age as well (Tristan turned 2 in February).

Welcome to the thread. Getting a diagnosis for a kid, from our experience, was extremely easy. Ours came at an appointment that lasted all of 30 minutes, because Tristan just showed a lot of the classic symptoms. Still waiting for my appointment, a little more than a month away.

Anyways, calm down, take a breath, and get ready for the long road most of us here are on as well.

Per the neurologist, I finally got up the nerve to email the nursery director about my diagnosis and stuff, telling her that part of my drive to know is due to observing the kids in the nursery last year, and that the main force behind it is figuring out whether we need to be on high alert for AbsurdBaby. She said she'll be on vacation for the next week, but she'll take the time to respond after that. Part of me is afraid she'd say that I was neurotypical, and all of my failings are because I'm a bad person. Either way, the suspense is getting to me, even though I've known something was different for 30 years; what's waiting another week compared to that?

I'm also working on getting an official diagnosis done. I found an ASD clinic in Boston that's willing to evaluate me, once I get a referral from my primary doc.

...who I'm seeing for the first time on Thursday. I wonder what the frak she's going to think - will she think I'm some sort of hypochondriac or malingerer?

Maybe you're like me and fall into the used-to-be-PDD crevice between neurotypical and ASD. Maybe it's "classic" something. Hopefully you get some useful info from your eval, though, since you're definitely not malingering or whatever some unthinking clinician could shrug off.

Thanks for all the kind words, gang. We most definitely don't have a diagnosis yet, and even if this is it, it's not a death sentence. Like I said, been dealing with a lot, and I'm just not coping all too well, which is why I'm also seeking help for myself. And obviously, you want the best for your kid, for him to have the easiest, most "normal" life possible. But of course, we all know that's pretty much an illusion, right? I mean I've been bouncing around most of my life, what the heck do I know about normal?

I'm still struggling with guild and all the "what ifs". Is it because my husband was 36 when he was born? Is it because I have PCOS and took fertility meds in order to finally conceive? Did we let him watch too much TV? Or was it the wifi? Or is it because we've been fighting off and on these past months? Questions that are more or less rational, but in the end, a moot point. I know I need to stop asking "why?" and start asking "what can I do?"

And Concentric... That Trauma of Parenthood article? Most definitely not centered on American culture. Perhaps on first world culture, in a general sense, but most definitely not limited to the US. Thanks for that.

We're seeing the pediatrician on Wednesday, we've got some appointments in September (they're fully booked), and if my husband has to go back to the mainland a bit earlier to get him the help he needs, then he will (and I'll stay back, finish my residency and thesis with little #2 in tow). We're definitely fully committed to doing everything it takes to make sure we do everything we can for him.

Also, Dee, if the interactions we've had on GWJ are any indication, you're most definitely not a bad person. Hang in there, hope time flies until Thursday.

concentric - going to have to look up that STAR system. Your mention is the first I've heard of it so thanks.

Eleima - Give this thread a read through from start to finish. You'll see many of our journeys from suspicion to diagnosis to acceptance and finally to the work of making our little loved ones' lives as rich as possible.

You'll drive yourself to a breakdown with the guilt. The truth of the matter is that no one knows what causes it. Just like you can probably recall a news story about how milk is bad for you one week, then vegetables due to pesticides, bread, etc. it's the same with causes of autism. When my son was first diagnosed I had to focus on something I felt I could control because I felt so lost and helpless with the diagnosis. So I latched onto exhaustively researching and reading about causes of autism. Paternal age, Maternal age, parent weights, any depression concerns ("Hon, are you SURE you weren't just a LITTLE depressed when you were pregnant?")...you get it. I realize now that it didn't matter and was just a distraction. All it did was divert me from where the focus should have been: my son. He was diagnosed and finding the cause wasn't going to change that.

What I can tell you is that if your son is diagnosed you will be very susceptible to woo. GFCF diets, chelation therapy, etc. Stay away from it all. If there was a cure it would be on the market in the form of a little pill by now. The only tried and true method at this point is therapy. Occupational Therapy, Speech Therapy, etc. Specialists that can help your son.

And don't worry about using other children as a measuring stick for your son. I mean, it's useful as a very rough guide but kids progress when they're ready. We fretted about our son's potty training and then at 4 years old he just started doing it on his own like he was an old pro. He was just ready.

Before we get carried away, get that evaluation done. One step at a time. I usually have Steam running all day so if you need to chat feel free to send me a message.

Ugh, I forgot that Thursday's appointment with the primary doc isn't even a physical; it's some introductory visit where they go over my previous records or some crap. I doubt I'd be able to get referrals at that point.

Eleima wrote:

And obviously, you want the best for your kid, for him to have the easiest, most "normal" life possible. But of course, we all know that's pretty much an illusion, right? I mean I've been bouncing around most of my life, what the heck do I know about normal?
.

I posted this over on Reddit in /r/aspergers (the guy I was responding to had a mother that was starting to feel he never had an issue, even though he was diagnosed), and I feel it fits this section of your post as well.

As a parent, the last thing you want for your children is to struggle with things that are completely outside your control. It's a very scary feeling to know that your child is different, and know that your best may not be good enough to give them a life that's without major hardship. It's even more scary, when you very well may be the direct cause of those hardships, due to genetics or mate selection.

I suspect I have Aspergers (currently awaiting an appointment to start evaluation), and my youngest boy was diagnosed as Autistic a few months back after we started noticing drastic developmental delays. He's getting good therapy, we're learning a lot in how to help him along, but at the end of the day I'm scared about what he's going to face later on. I would love to wake up one day and think "maybe it wasn't right". I would love to see him fit in, and be treated as normal. But I look at him, and I fear that he will be bullied (and don't get me wrong... he's pretty tough, I almost feel sorry for the "bullies"). He may be treated as inferior. And all I can do is be there to pick up the pieces that are left of him, when the world tries to beat him down.

In my case, I'm about 99% sure I'm on the spectrum myself. Every time someone new evaluates Tristan, they always ask the question "Is there anyone else in the family on the spectrum" and they might as well just jab a knife right through my heart. It really sucks seeing the negative qualities in both myself and Tristan, while not seeing any of the positive qualities I may be able to attribute to it. My hope is that he'll be fairly high functioning. For me, I've known all my life that I did things a little differently than others, but was able to fit in OK up until I was 30.

But he is the way he is. I don't have any control in that. Therapy can help, but the therapists don't actually have any control either. They're just trying things to see what works, because each kid is different, spectrum or not. You'll find things that help, you'll find things to avoid. I know a lot of people put up the GFCF diet, but I didn't see much change with him, and our oldest boy has Celiac's (can't have any gluten, or else it'll be like the bathroom scene in Daddy Daycare), and my wife is gluten intolerant. At home he eats what's cooked, which is GF, and when we eat out he normally just eats what I'm eating, which isn't. And I've seen no difference in behavior at all.

I've rambled a bit so I'm going to wrap this up. Anyways, you'll never get an answer as to why, so don't focus on it. Things do tend to fall into a bit more of a routine once you get a diagnosis though, because you do start focusing on a very specific road to help him, so I'd say look forward to that, and take one day at a time.

Thanks for the advice, FSeven. Like I said in my first post here, I'd taken a quick peek, but it was only in the first page or two. I'm actually in the process of reading it all. Like actually reading EVERYTHING. And I think it's doing me some good. A high point was definitely one of yours, those letters on the fridge just left me flabbergasted. It's definitely nice to see some progress, even though I'm only at page 5. I think I'm hoping that we're in the low point, that this is the darkest time, when he's regressed, can't communicate, gets frustrated but is still incredibly smart and that it will get better once we get him (and us) the help we need. And thanks to all of you for your kind words. PurEvil, that part where you quoted yourself from Reddit really helps. I'm really trying not to dwell on the wherefore and why, I know it's not helping and completely useless.

I'm still processing it all, and expect to keep doing that for a while. I keep trying to get an appointment for myself with a psychiatrist who works at the hospital and specializes in maternal health (post-partum depression and the like), but it's been a nightmare reaching her. I'm used to getting the run around, I mean I know the inner workings, but good grief, it's so much more distressing when you're a patient in need of a help. I've half a mind to lodge a complaint against one of the obgyn secretaries, but she didn't give her name.

Anyhow, I'll be quick, lest I hijack the entire thread and turn this into the Eleima-LiveJournal-of-Woe We saw a pediatrician this morning for Matt, and it was a bit disappointing to say the least. Getting his measurements (height, weight, head circumference) alone was a trial, he was throwing fits, crying, yelling... He really doesn't do well with new people and places. The pediatrician was a man in his fifties, I think, and he didn't tell us anything we didn't already know: to make an appointment in the specialized center, and with the neuropediatrician at the hospital. The only bit of advice he gave us was to pick a routine and stick to it, going as far as to suggest we lock Matt in his room after 9pm or whatever time we pick. As it is, we've been having a hard time putting him to bed, and hubby usually stays next to him until he falls asleep.
And it's so frustrating that I don't have much weight at the hospital, I'm only a resident, so I can't speed up the process any more. Plus, July is pretty much vacation month, everyone's going away, taking time off, so...
Yeah, we're basically being told to wait.

But we're not, we've got some friends in mainland France, so we're tapping those connections, and seeing what else we can do. It's just so frustrating in the meantime.

I've sat with Tristan for a time until he seemed to be knodding off, but bedtime typically isn't too rough for us. Even our oldest doesn't like laying down, and most of the time Tristan just throws a fit for about 10 minutes, then he's out. He'll wake up in the middle of the night occasionally, but I won't go in there because it will hurt more than help. He'll get excited that I'm in there, and upset when I leave. Sometimes you really do need to lay them down and let them fight it out. Routine is everything. It helps build his expectations on what's going to happen, and when it happens that particular way every time, it really cuts a lot of the anxiety out of a situation.

Another thing is that you should verbalize what's the next step on the routine, and give specific timeframes for when it's going to happen. Stuff like "in a few minutes, we're going to have a bath". Then during the bath, "after we're done with bathtime I'll get you in your pajamas and lay you down for bed". You might get some fight, but you're setting the expectation early that those things will happen next. This helps even with NT toddlers, so it's worth trying to get into doing this regularly, if you don't already.

Bedtime and sleep are pretty much the hardest things as far as Owen is concerned. He goes to bed late, is difficult to get to sleep, wakes often and early. We have done a bedtime routine, and it can last well into 2 hours with the last hour being laying in bed with him until he falls asleep.

The pediatrician suggested trying Melatonin and I would like to, but my wife is reluctant.

I find it so difficult when he is up at 630am, and if it is a day off for me I spend the entire day until often 1030 at night with him since he isn't napping anymore. I love him to death, but that is a LONG day when he demands so much attention.

Add to that, he seems to be finally going through his terrible 2's (he's 3), and basically says no to everything!