Autism thread

Got a question for you Concentric, and any others with 3-5 year old ASD kids.

12 months ago Owen was non-verbal, and now he never shuts up. Particularly over the past month or two his speech and vocabulary has gone through the roof. Still at times hard to understand, especially when he is using a new word but the trajectory is fascinating to me. Like most developmental milestones, Owen seems to be about a year behind and then when he does something he does it with amazing speed. I thought the kid might never speak, boy was I wrong.

We've been potty training on and off for about 6 months and the last week he has all but trained himself.

I find this disorder or whatever you want to call it fascinating sometimes.

Our trajectory appears to be very different. My son just turned 4 and his progress remains at a standstill. Technically he is making progress in therapy but it seems like it's taking him years to master things that kids often learn before they turn one. I also have a sinking suspicion if he stopped the 35 hours of therapy a week, he'd forget most of this stuff within a couple of months.

It's a bit like a marathon runner, making progress. But it's not a marathon, it's a NASCAR race, and unless we hop in a car soon, no way we'll come close to finishing. Time is almost out it feels like.

The newest development: my son's MRI apparently showed some level of cerebral atrophy. We'll get the official report next month but the impression I get is that this won't necessarily lead to any kind of answers or new treatments. We'll need to repeat the MRI in a year to see if anything changes, which led me to the scary thought, "What if this is something progressive?"

I doubt it will be. Whatever damage or abnormality there is, is probably already done. The big thing in my mind is this: with the combination of this MRI finding, the abnormal EEG, and his development so far, I think a diagnosis of intellectual disability is certain.

And the prognosis for ID and autism is far different from autism with normal or above average intelligence. Right now I doubt my son will ever develop normal language and I'm actually very worried he'll ever be potty trained.

Depression for my wife and me continues to slowly escalate. In my son's case, it is very much a disorder, and seems to be a severe one at that.

My son is more like gewy's: what progress he makes is extremely gradual, and he still has yet to acquire skills at five years of age that other children learn at 12-18 months. In some ways, my 9 month old daughter's pre-verbal skills are stronger than my son's.

But I've also made my peace with that and am not worried about winning any race. We make it as far as we make it, and knowing what we know about his condition, there's a very good chance that later in life we'll go backwards before it's all over. I fear that part of it, but for now he's five, and we're focused on five.

And right now, that means that we're still plugging away at bath time, many months later. He's still afraid of the tub, and we're doing in-home ABA therapy three nights a week to try to work him toward being okay with bathing again. Unfortunately, he's started to associate getting his clothes changed with being asked to make progress toward taking a bath, so we need to back off the therapy a bit or else we'll have him refusing to change clothes or his diapers.

Day by day. Sometimes minute by minute. We get by.

El-Producto, that's really nice to hear about Owen. I think it's hard to generalize about Alex's progress, but we've had a lot of good luck with his therapies. But we're still working on potty training, and eating all but a few preferred foods is really hard for him to do. I think sensory issues have become a bigger deal for him over time. I'm pretty sure that those are what are slowing his progress with potty training. Please, let it happen by kindergarten! But ultimately he will do it when he is ready.

At this point I think there's a good chance he'll be able to do a lot for himself as he gets older. Something that makes me laugh is that while he can dress himself, the odds that he will have at least one piece of clothing on backwards are at least 50%. I hear him repeating to himself phrases I say to him while he gets dressed: "tag goes in back, pocket goes in front." So this is a rambling way to say that while his cognitive abilities are above average, he's a lot spottier, and at least a year behind, in a number of other areas.

I just saw this article today, and I think it had some really interesting approaches:

http://restlesshands42.wordpress.com...

Imagine a typically developing boy of the same age. His mother sends him out to play on a muddy day with the instruction “don’t get your clothes dirty!” The boy thinks about this for a moment and wonders if the rule applies to his shoes as well. So he asks. In words. Verbally. He says something like “Does that mean my shoes, too?” And he gets an answer.

Such a simple and obvious exchange, we hardly notice it.

But now think of a relatively nonverbal child in the exact same situation. He has the same question in mind, but he lacks the words and the ability to ask the question verbally. He still wants to know the answer. And the only possible way for him to get the answer is to perform an experiment, to try the action that he is not sure is allowed and see how people react. He’s not trying to test limits or get anyone upset or cause trouble– he’s just trying to ask a question (as all children do), using the only method he knows.

So please, think of this possibility the next time you work with a child who seems to be trying to get around the rules or give you a hard time. They may just want to understand better, and it would be unfair to punish them for that perfectly reasonable desire. Please assume, at least at first, that the child has the best of intentions. Be respectful of the fact that they may genuinely not understand, may not have the same basic knowledge about the situation that you take for granted. And please take responsibility for your part of helping the child behave well: be as clear and explicit as possible when setting rules. Choose your words with care, in order to make the situation easier for a child who might be struggling very hard to do the right thing.

gewy, I hope the MRI findings don't reflect the initial report, or at least show something you may be able to do for your son. What Clock says about her son helps me too, though I know our circumstances are different. But finding some level of acceptance in my situation has not always been easy. And I do hope that Jameson becomes more comfortable with water!

El-Producto wrote:

Got a question for you Concentric, and any others with 3-5 year old ASD kids.

12 months ago Owen was non-verbal, and now he never shuts up. Particularly over the past month or two his speech and vocabulary has gone through the roof. Still at times hard to understand, especially when he is using a new word but the trajectory is fascinating to me. Like most developmental milestones, Owen seems to be about a year behind and then when he does something he does it with amazing speed. I thought the kid might never speak, boy was I wrong.

We've been potty training on and off for about 6 months and the last week he has all but trained himself.

I find this disorder or whatever you want to call it fascinating sometimes.

Tristan is a lot like Owen, and he'll be turning 3 in February. When I really got online and started looking into Tristan's... symptoms, for lack of a better word, he was nearly non-verbal at 18 months, with very limited interaction with us, and absolutely epic meltdowns, sometimes lasting hours. At the same age, Sabastian was speaking in short sentences (granted, they often didn't make sense, but he was putting 3+ words together at that point), and following simple directions, while Tristan was still working on consistently using mama and dada.

Within the last year his speech and vocabulary have kind of exploded. He's quite vocal, though still pretty difficult to understand most of the time. For instance, he can't even come close to saying "Sabastian", so it comes out like "Ban-yun". But he's trying, and we'll certainly keep trying with him. He's not age appropriate, but he doesn't nearly feel as far behind as he did at 18 months.

We're going slow into potty training. He mimics a lot, so I'm thinking of having him in the bathroom when Sabastian goes, but a lot of it is getting him to tell us when he needs to go. And tonight marks the end of the crib for Tristan... he's officially in a toddler bed, and the transition was pretty much better than I expected. He laid down, didn't get out of bed, and fell asleep after a while.

Please don't mistake my post as an attempt to compare anyone's kids, I know they are all different.

I'm just fascinated at the progress of various kids on the spectrum.

El-Producto wrote:

Please don't mistake my post as an attempt to compare anyone's kids, I know they are all different.

I'm just fascinated at the progress of various kids on the spectrum.

The funny thing is, you started it out by saying you had a question, then never put the question in... I'll admit that I saw your post as "has anyone else had this type of experience?".

But I agree that it's fascinating. Tristan's progress has thrown his therapists for a loop, to the point where they got the school psychologist involved because they don't think he's on the spectrum.

It's so frustrating when you want your child to be as high functioning as possible, but when they are they don't get any help.

A thousand times, this.

My oldest (13 yo), is high functioning with ADD, dyslexia, and speech hurdles he has had to overcome over the years and I was frustrated when I felt he wasn't getting the attention he needed/deserved to receive. Thankfully, he has a very stubborn father, yours truly, a fiercely protective Nana, and my lawyer girlfriend who lights fires under asses when she feels the situation warrants it.

Never stop pushing, they will try to push back, but don't relent and accept their answers if you don't feel that they do enough to address the problem.

Edited for Clarity.

I hesitate to try and recap Matt's progress, myself. If I look at the broader scale, there's been little. But it's the little things. He can hold our hand as we walk much more easily now. His eye contact is better. The meltdowns are fewer, more far between, and not as intense. He knows how to "ask" for things more easily now (looks at the object, then us). His sleep patterns are improving.

So he's 3, still non verbal and not potty trained, but gosh, all those other things...

And yeah, I was surprised too when I didn't see a question in your post.

Haha, had my mind on other stuff I guess.

I really was just asking for other's experiences with the trajectory or lack of.

cartoonin99 wrote:

My oldest (13 yo), is high functioning with ADD, dyslexia, and speech hurdles he has had to overcome over the years and I was frustrated when I felt he wasn't getting the attention he needed/deserved to receive. Thankfully, he has a very stubborn father, yours truly, a fiercely protective Nana, and my lawyer girlfriend who lights fires under asses when she feels the situation warrants it.

Never stop pushing, they will try to push back, but don't relent and accept their answers if you don't feel that they do enough to address the problem.

Edited for Clarity.

This is why my wife and I decided to homeschool long before we even had a diagnosis. I can only believe it helped my daughter. Not only did it avoid bad sensory experiences that would likely have set us back, but it have us the opportunity to really connect with her and what she loves. I don't think a classroom setting could have offered that.

When we brought her in to the school to see what services we qualified for, they were amazed at how much my daughter knew already (she's seven and reading at a fourth grade level). (Yes, I am bragging on my wife a bit. She's been amazing through all of this). We qualify for some therapy services and some special classes, which is really all we wanted anyway.

Potty training was one of those things that was easier because of the homeschooling. Since she was home with my wife, we could wait until she was ready. When she was ready (at three) she trained in three days and has been without accident except for a brief spat when she was five and her body grew bigger than her bladder.

We still have to encourage her to go in the morning, though, because she'll wait all day to go if we let her, and that's just not healthy.

The best successes we've had with her have been when we decided to just accept who she is right now, rather than trying to push her to do things she's "supposed" to be doing. We share her joys as much as we can, earning her trust so that when we do introduce something new she won't hide from it. Three years ago even showing her the box from a new DVD or game would result in screaming. Now we get a polite "no thank you" and even, on occasion, interest.

She still doesn't like being pushed to do things, but now when we do she trusts us enough to listen when we say she has to, even if she complains.

I feel like love and trust are the two most important things you can have with a kid, especially one on the Spectrum. The whole reason they withdraw, from what I can tell, is because they don't trust the world not to hurt them, but if you can prove that the world won't hurt them-- give them a soft place to land-- they might be able to open up.

It's hard, but what else can we do?

As luck would have it, I'm sick and have now completely lost my voice. And to be completely honest, it's giving me a very interesting appreciation of how frustrating it is not to be able to communicate with words. I know I have no idea what it's truly like for my son, but my own very temporary thing kinda sheds light on what it feels like to have someone ask a question and you're unable to answer.

We've been setting up an app called NikiTalk for Matt and I've been told he's been takin to using pictograms really well. Stayed tuned!

Nothing quite like waking up at 2 am to your son screeching nonstop. He spent 30 minutes bouncing up and down slapping things and giggling uncontrollably. Now his screeching has changed; more like he's crying and in distress. Seems like maybe he's in pain or something but I have no idea if he is, much less where. At this rate, he'll probably scream himself hoarse.

And all this time he's intermittently slapping the side of his head, whether he's laughing or crying. We thought the self-injury was fading out, but the last few days it's been back almost as bad as ever. Why? Hell if I know. He just seems so miserable right now and I don't know how to help him.

So I'm just lying in bed, hoping the clonidine I gave him kicks in and he goes to sleep soon. Maybe he's so labile and distraught because he woke up too early and is tired. Maybe he'll be calmer and feel better in the morning.

This is an especially bad night, but not too far outside of what we typically experience. Wife and I have taken to doing "shifts" with him so one can rest while the other is on duty. One of us will probably be sleeping in the basement where it's relatively quiet for the foreseeable future.

Really wish I knew what was going on in his head and how to help him. This really sucks.

gewy wrote:

Nothing quite like waking up at 2 am to your son screeching nonstop. He spent 30 minutes bouncing up and down slapping things and giggling uncontrollably. Now his screeching has changed; more like he's crying and in distress. Seems like maybe he's in pain or something but I have no idea if he is, much less where. At this rate, he'll probably scream himself hoarse.

And all this time he's intermittently slapping the side of his head, whether he's laughing or crying. We thought the self-injury was fading out, but the last few days it's been back almost as bad as ever. Why? Hell if I know. He just seems so miserable right now and I don't know how to help him.

So I'm just lying in bed, hoping the clonidine I gave him kicks in and he goes to sleep soon. Maybe he's so labile and distraught because he woke up too early and is tired. Maybe he'll be calmer and feel better in the morning.

This is an especially bad night, but not too far outside of what we typically experience. Wife and I have taken to doing "shifts" with him so one can rest while the other is on duty. One of us will probably be sleeping in the basement where it's relatively quiet for the foreseeable future.

Really wish I knew what was going on in his head and how to help him. This really sucks.

I hope you are able to get some rest. I'm sending out comforting thoughts and prayers to your family.

The clonidine did work and he was back to sleep within an hour. That stuff is pretty reliable. If it weren't for it, we'd probably all be so sleep deprived we'd be suicidal.

Unfortunately he's already amped up this early in the morning which does not bode well for the rest of the day.

Keeps hitting his head too. It's heartbreaking to see. We gotta play the guessing game; does he have a headache? An ear infection? Did something change in his brain to make him want to hurt himself again? Feel pretty helpless.

Anyway, wife's turn to be with him. I probably have 2-3 hours to get some rest before she has reached her limit and starts getting very tired and grumpy. This is the state of our lives now... It could be worse I guess. Part of the problem is that I bet it will get worse before it gets better. No relief in sight.

Gewy, my heart goes out to you, truly. Is there no respite care in the area that you could look into so that you and your wife can get a break? I'm not sure how it works on your side of the Atlantic, but perhaps there are services. You can't go on long-term like this, it's just too hard, you need some relief, if only to catch your breath. Isn't there any family nearby to help? I wish there was something I could do...

I heard this on the way to work this morning and I have no idea if it will be useful to any of you, but I haven't heard fragile X mentioned in this thread,

http://www.npr.org/blogs/health/2014...

Eleima wrote:

Gewy, my heart goes out to you, truly. Is there no respite care in the area that you could look into so that you and your wife can get a break? I'm not sure how it works on your side of the Atlantic, but perhaps there are services. You can't go on long-term like this, it's just too hard, you need some relief, if only to catch your breath. Isn't there any family nearby to help? I wish there was something I could do...

Respite care certainly exists in the US, but if there's a provider in Gewy's area, it's probably got a long waiting list, which is unfortunate. People tend to forget that caregivers need care also... until it's too late.

It will get better when the holidays are over and he's back to 35 hours of therapy a week. Another 13 days from now... Not that I'm counting or anything.

Respite care is going to be tough. We'll have a hard time trusting our son's care to someone we don't really know. Guess it will eventually get to the point that we have no choice though.

Boy Gewy, my heart is with you right now.

gewy wrote:

It will get better when the holidays are over and he's back to 35 hours of therapy a week. Another 13 days from now... Not that I'm counting or anything.

Respite care is going to be tough. We'll have a hard time trusting our son's care to someone we don't really know. Guess it will eventually get to the point that we have no choice though.

I hope your son adjusts to the new holiday routine so that you and your wife can find some down time. And trusting other people with your special needs child is definitely tough. I am glad to hear the clonidine helps.

Well, the head-hitting continues to escalate. Now it's as bad as it ever was. I wish I knew what made it go away for a couple of months then come back.

I'm seriously wondering if the cerebral atrophy seen on his MRI is due to repeated mild head traumas, like they're now worrying about with football players and other athletes. If so, it's probably critical we get him to stop hitting himself, since traumatic brain injury is so potentially bad. How to stop it? I have no clue. I guess we'll strggle with getting him to wear a helmet again.

Is this going to be the remainder of our lives? Dealing with one new problem (or old problem I guess in this case) after another, with little hope for improvement or progress? It certainly feels like it these days.

My heart breaks when I read your posts, Gewy. I feel so powerless, I wish there was something I could do...

Is it possible there's something in his room that is over-stimulating him? Maybe a low hum that you don't even notice unless you look for it? Or maybe it's too quiet? Or some visual thing that might have to do with the light quality in the room or something that's changed in the room visually that he really notices when it's happening most?

I ask because my daughter is very sensitive to some stimuli-- usually auditory but sometimes visual-- and when we are able to "calm the room" we get better interactions with her. From the research we've done, stimming is usually (not always) the child's way of dealing with being overwhelmed. If you can find the source of the overstimulation and mute it somehow, you might see less of the behavior you're seeing.

A white noise generator might help, or it might hurt depending on what is overwhelming him. My son definitely responds well to it.

Nothing is going to work for everyone, but that's what worked for us.

Those are all good suggestions doubtingthomas. That said, my son's self injury can really take place anywhere, in any situation. If there's some aversive stimulus, it's something ubiquitous.

I really don't think that's it though. He is more of a sensory seeker and I think if anything, hitting himself is a way to satisfy some unmet sensory need that's lacking somehow. He seems to always crave movement for one thing. In the past, swings were very effective in calming him down. Car rides are still partially effective, and that's our go to solution when he's having a meltdown. Seems like it doesn't work as well as it used to though. I guess we could try spinning again maybe... I forgot about that.

It's not universal, but it seems like a typical scenario for major head hitting is when my son is quite tired and doesn't have the energy or focus to move around or distract himself on his own much. Trouble is, our ability to engage or distract him seems pretty limited as well.

I've never posted in this thread before but reading it is very heart breaking, just wanted to give my support to all of you (us) finding your way through a spectrum disorder. I feel bad even posting this given the awful struggles that gewy is going through but we last week celebrated our 11 year old son on the spectrum actually being completely removed from his IEP because he no longer needed any services.

When he was diagnosed at 3 we were told that he might be able to live independently some day but more likely in a group home setting (I still want to beat that woman) and now he is a "normal", thriving 6th grader functioning completely independently (well with lots of organizational support from his parents). I'd like to say that we did all the right therapies (which I'm sure helped) but I also know that we are just damn lucky that his brain developed in a different way than some kids on the spectrum whose parents also poured themselves into his care.

Just wanted to say for those starting out, don't know where your journey will lead but stay strong. They are amazing (frustrating, loving, brilliant, weird, beautiful) kids and you just never know how they'll turn out.

Docjoe wrote:

I've never posted in this thread before but reading it is very heart breaking, just wanted to give my support to all of you (us) finding your way through a spectrum disorder. I feel bad even posting this given the awful struggles that gewy is going through but we last week celebrated our 11 year old son on the spectrum actually being completely removed from his IEP because he no longer needed any services.

When he was diagnosed at 3 we were told that he might be able to live independently some day but more likely in a group home setting (I still want to beat that woman) and now he is a "normal", thriving 6th grader functioning completely independently (well with lots of organizational support from his parents). I'd like to say that we did all the right therapies (which I'm sure helped) but I also know that we are just damn lucky that his brain developed in a different way than some kids on the spectrum whose parents also poured themselves into his care.

Just wanted to say for those starting out, don't know where your journey will lead but stay strong. They are amazing (frustrating, loving, brilliant, weird, beautiful) kids and you just never know how they'll turn out.

Fantastic post, thanks Docjoe! Any suggestions or insight you can give would be great! And give your boy a hug for us, sounds like he's done a LOT of hard work.

Like many parents we tried several different things but in retrospect there were a few that I think really made a big difference. Of course this was for our son and what worked for him may not work for your child. We followed the RDI system, went to Steven Gutstein's conferences, hired a RDI therapist and that seemed to fit our child well. We looked at ABA and it didn't seem to fit for us although I know others swear by it. We wanted a flexible thinker/feeler and RDI seemed to promote that more than ABA.

The area that we put a ton of focus in that I think really helped was working on his sensory issues. Everything seemed to be rooted in his disordered sensory system. We found some amazing autism PT/OT practitioners (who were of course completely out of our healthcare network) that worked wonders with him. The gains were initially so tiny and I often wondered if we were really making any progress but looking back, I think the work invested there has really paid off. Our basement still looks like a physical therapy unit with all of the sensory input devices/swings/balancing boards that we used for him.

We also got consults from the folks at Pace Place in Oregon and actually had one of them spend an entire day with Jaden and he gave us really helpful tools to work with.

But for us, it came down to my wife who is an LICSW trained in special ed to basically make him her full time job (she actually quit work and she has stayed home supervising all of his programs). We had financial resources that not everyone has since I make a good income as a physician which allowed her to stay home. We had very good health insurance. We had tons of support from family and friends.

in spite of all of that, we often felt completely lost and unsure if we were doing the right things, following the right philosophy, seeing the right people, eating the right diet. It was incredibly stressful on our relationship. It was incredibly expensive (in spite of very good health insurance, we still spent tens of thousands of dollars out of our pocket to get access to the people we felt we needed). I can't imagine how people can do this while working full time jobs. Although I also know how incredibly stressful it is if you let your world become nothing but your autistic child (which my wife at one point did). At least I was able to escape every day to a non-autistic work environment.

I treat people with cancer which is a tough disease but it is a clearly defined enemy with usually clearly defined treatment pathways. I still don't understand autism even a little bit. I hope that some day we'll have enough research that not every parent will have to find their way like we all do currently.

Thanks for your posts, Docjoe. I find it really interesting that the sensory issues were what made such a difference with your son. More and more I see this as the really difficult issue for my son. We also are fortunate to have good health insurance (despite how we've had to fight them in the last few months), and it also looks like the Medicaid waiver is coming through. We are really fortunate. I am very glad to have your perspective. And you and your son are so lucky to have your wife able to help him. I often wonder whether I should have chosen a similar path.

Our son is making progress every day. He seems to be a very sweet fellow and the therapy we've provided him is providing him the means to express that part of his personality.

Please continue to give us any information about what's helped your child! From my layperson's perspective, autism is a perplexing disorder that nobody really seems to understand. I hope that the recent research into prenatal and genetic causes illuminates new ways to help our children.

I can't speak for Gewy, but I will speak for myself. Please don't feel bad posting positive stories, even when others are struggling, Docjoe. In fact, please keep 'em coming. It gives me hope. I know all our kids are different, and that we have no way of knowing what the future is made of, but I have to hold on to the little things, to the glimmer of hope that maybe, just maybe, my Matt will one day grow up to be a well adjusted 6th grader too.

I haven't posted many updates, because stuff is so freakin' complicated these days. I spend my weeks away in Paris, and my boys are at my parents', under the care of their father and my mother. ABA is kinda working for us, at least for now. Matt is making some progress, he is much better when it comes to holding hands as we walk outside, complying when we ask him to sit. He still doesn't speak, and I've always considered him non verbal, but our therapist says he actually is verbal, because he'll babble. And I caught him kinda singing last weekend. And he jumped. He's never jumped before. But then, there are the other things that are off. I see him walking on tip toes a lot more, or spinning around in circles. It's not that big of a deal, but he didn't do it this often before.
I can't help but think that the deteriorating relationship between his father and I has some role to play.

Ugh, sorry, I didn't mean to start LiveJournal'ing. What I wanted to say is that, DocJoe, you're welcome in this thread, abso-freakin'-lutely. And yeah, I'm with you guys on autism, we still have so much to learn...