Autism thread

Over the last few weeks my son has started to have scary violent meltdowns at seemingly random times. Everything is fine one minute. Then he's crying, yelling, hitting his thighs or head, hard, with both hands, and biting anything he gets his hands on. I feel so sorry for him. It seems like he loses all control and ability to cope with... whatever it is.

Wife and I are physically and emotionally drained. The constant vigilance, being ready to intervene at a moment's notice... It wears you down. I just wish I had some faith it would get better, or even just not get worse. If he's still doing this as a teenager, someone is liable to get badly injured.

I'm so sorry to hear that Gewy, that must be incredibly hard for all of you. Is respite care an option? Is family available to help out a bit, even if it's just for an evening? You and your wife really need to get a breather...

Thought this was interesting:

http://www.cio.com/article/3013221/c...

In order to compete in the innovation economy, companies need employees who think differently. That's why, in May 2013, SAP launched its Autism at Work program, which is aimed at recruiting and hiring adults on the autism spectrum. The program has been such a success, SAP is currently working to expand it, with the goal of having 1 percent of its total workforce -- approximately 650 people -- fall on the spectrum by 2020, says José Velasco, head of the Autism at Work program at SAP.

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"We've seen tremendous growth since May of 2013, with pilot programs in India, Ireland, Canada, the U.S. and Germany, and we've begun pilots in the Czech Republic and Brazil. In March 2015 we counted approximately 40 employees on the spectrum as part of the program; we'll hit 100 by the end of 2015," Velasco says.

Sorry, I just have to gush as we had a moment tonight which caused us to shed tears. Owen has been doing incredibly well in Junior Kindergarten. His case manager who has been working with ASD kids for 15 years, said when she observes him in class if she didn't know his diagnosis she wouldn't be able to pick him out. He's socializing well, has made some great friends who he loves to have over to play, he's starting to read and right.. he's just killing it.

Tonight was his school Christmas Concert and the class dressed up and sang Away in a Manger. He did everything so well, sang out loud and did all of the actions in front of about 150 people. My wife and I literally broke out in tears. When we got the diagnosis 2.5 years ago, a non-verbal/non-social kid, I would never have guessed he would be capable of doing as well as he is. He's worked so hard, and I'm so proud of him.

Rahmen wrote:

Thought this was interesting:

http://www.cio.com/article/3013221/c...

In order to compete in the innovation economy, companies need employees who think differently. That's why, in May 2013, SAP launched its Autism at Work program, which is aimed at recruiting and hiring adults on the autism spectrum. The program has been such a success, SAP is currently working to expand it, with the goal of having 1 percent of its total workforce -- approximately 650 people -- fall on the spectrum by 2020, says José Velasco, head of the Autism at Work program at SAP.

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"We've seen tremendous growth since May of 2013, with pilot programs in India, Ireland, Canada, the U.S. and Germany, and we've begun pilots in the Czech Republic and Brazil. In March 2015 we counted approximately 40 employees on the spectrum as part of the program; we'll hit 100 by the end of 2015," Velasco says.

I read recently about a company that conducts interviews for technical jobs by putting the candidates in a room with Lego mindstorms and a task so the candidates can be judged on the strength of their technical skills rather than their social skills.

I approve wholeheartedly. If autism is a disability on par with deafness or other sensory issues, then I see no reason why the ADA shouldn't apply to provide autistic people with accommodations to do jobs that they are perfectly capable of doing.

El Producto: I'm so happy for you and Owen!

Parents of NT kids will never fully understand how joyful it is to make the connections that they take for granted.

gewy, I also hope you and your wife can get respite. This sounds really, really hard.

E-P - that is really nice news about your son!

Alex is making some friends, and has regular playdates with another boy who's also likely to be on the spectrum. Alex is struggling with controlling his anger. He will hit (very lightly, but still...) others when he's frustrated. That's frustrating US. He's a lot better on using the toilet but still needs lots of reminders, and still needs to wear pull-ups. But on the whole, he's doing well, and is a happy kid.

So... my wife got orders to Norfolk, and we're in packing mode. We can't sell our townhome right now, because we owe a little more than it's worth, so we've got guys coming in talking with us about managing renting the place out. First appointment goes pretty well, the kids throw a fit trying to get attention, but pretty uneventful.

The second guy comes in, sits down, and starts talking with us. The boys had gone upstairs and I figured they were playing in their room. Nope. Tristan comes down and offers the guy a cup... of poop. He squatted down, pooped in a small plastic cup, and toted it downstairs. I think my wife and I died a little bit on the inside. The guy didn't make a big deal out of it, he said he had boys and understood.

For the life of me I don't get it. The school has been putting off potty training saying he isn't ready. But the little f*cker can get all his poop in a god damn plastic cup. I changed his diaper immediately afterwards and his little ass was clean. So begins potty training...

I feel you, PurEvil. Alex is 5.5 years old, and CAN use the toilet. But in the past couple of weeks, he will allow his pull-up to overfill and soak his pants and whatever he's sitting on with urine. Very, very frustrating, and the people we ask about it don't seem to have very useful advice. Back to timers.

We had the most success with pure bribery. Owen really struggled with going #2 in the toilet. Not sure if it was the muscles he had to use, or what but it took for ever. We finally gave him a Kindersurprise (Canada only?) which is a chocolate egg with a toy in it every time he had a dump in the toilet and not in his pants. He's totally trained now (except at night), and the bugger still asks for eggs every time he goes lol.

concentric wrote:

I feel you, PurEvil. Alex is 5.5 years old, and CAN use the toilet. But in the past couple of weeks, he will allow his pull-up to overfill and soak his pants and whatever he's sitting on with urine. Very, very frustrating, and the people we ask about it don't seem to have very useful advice. Back to timers.

Have you tried the "No pants and a carpet shampoo machine weekend"? That's what finally worked for both of mine.

Who's up for another ten years of guilt and fear-mongering?

Children are more likely to be diagnosed with autism if their mothers took antidepressants during pregnancy, a new study shows.

In the new study, women who took antidepressants in the last six months of pregnancy were 87% more likely to have a child later diagnosed with autism. Doctors saw no increase in autism rates in women who took medication for depression in the first three months of pregnancy, according to the study, published online Monday in JAMA Pediatrics.

I'm really getting fed up with these splashy, inflated statistical click-bait. The article goes on to give away how bogus the headline is in the next paragraph:

Rates of autism in the study were lower than in the U.S. population. In the study, the overall rate of autism was 0.7%; that rate rose to 1.2% among women who took antidepressants in the second or third trimester.

In the U.S., about 2.2% of children ages 3 to 17 — about one in 45 — have autism, according to the Center for Disease Control and Prevention's National Health Interview Survey, conducted in 2014.

So, to be clear, in a study where the rate of autism diagnoses were lower than that recorded in the general population, the rate of diagnosis increased from 0.7% to 1.2%. Naturally, the headline reads "THIS DRUG INCREASES YOUR CHANCE OF HAVING AN AUTISTIC CHILD BY 87%"

Oh, and did I mention that no other studies have been able to reproduce these results? And that the study ignores premature births? Or that the study doesn't account for the fact that a woman with depression might be suffering from sensory processing issues and therefore be genetically predisposed to having a child with sensory processing disorders?

But by all means, let's add anti-depressants to vaccines and "refrigerator mothers" on the list of things that we can wrong our hands about. Heaven forbid the mother of an autistic child be able to get through a day without blaming herself.

Well, the two weeks of intensive potty training right after his 5th birthday was not successful. Discouraging, but at least we're not spending all day in the bathroom now.

Next step is an even more intensive program at Emory University in Atlanta. Not gonna be a fun week. Hope it works.

Fingers crossed, Gewy. I understand your frustration and really hope it pans out.

Tristan's been out of school since around my last post, and just got on the bus to his new school a few minutes ago. I'm glad to get him back in services, but it kinda sucks that they couldn't get him in at the school a few blocks from our new home, and is instead going to a preschool 15 miles away... so every morning he'll be on the bus for around an hour before he even gets there.

The person who does placement said that this should only be for what's left of the year, and as soon as they can they'll try to move him to the closer school. At that point he'll also go from half days to full days. On the bright side, at least he's starting to understand potty training, even if he still goes mostly in diapers. We've had two successful urinations, one I didn't find out about until I found him in the bathroom.

Now I just need to find work, and after that, daycare. As it stands, I think we'll have to have the boys in separate daycares. Sabastian is old enough for the military before-and-after care now, and they'll bus him to his school, but Tristan is too young. Oh well, we'll figure it out, gotta find a job to pay for it first.

I'm reading a book on eating habits and I've just started a bit which talks about teaching children how to try new food. I've not finished the chapter and don't have the book to hand, but here's a link to the technique the book mentions:

https://www.ucl.ac.uk/news/news-arti...

I'm posting here because I think the book says a similar technique was used with autistic children. I thought people here might want to read more about it in case it might help.

http://www.amazon.co.uk/First-Bite-H...

We've had some luck with a similar technique. The trick is to let the kid come to the food. If you try to force, cajole or bribe the kid into trying the new food, all the kid learns is that even you don't think they'll like it.

My wife has done a phenomenal job getting both our kids to try new foods, and now even my daughter is asking for some of the things we've introduced. (French toast was a big deal, and she asked for it for lunch yesterday!)

My son is in food therapy. It involves introducing the child very gradually to new foods, and letting the child become accustomed on his/her own terms to the appearance, texture, and taste of them. So there's lots of playing with food, and things like "kissing the food goodbye." With the right therapist, my son has made decent progress.

Good luck to all with the potty training. My son has recently decided to wear only big boy underwear. It's gone fairly well so far, but he needs reminders. His reward will be a Thomas the Tank Engine Transformer robot, which he found on one of the millions of toy video reviews on youtube.

Just saw my post from 2 months ago about the meltdowns. They faded away for some mysterious reason. Now my son is generally in a good mood unless overly tired. Wish I knew what was causing them in case they come back in the future.

Right now though, I'm going through a bout of depression anyway. Apparently the psychologist and behavioral therapist working with my son both speculate there might be something medically wrong with him. The only basis for this though is that he hasn't been making progress like most kids do with such intensive therapy. So it's not like they have any kind of leads for us to follow up on. No one even knows who they could refer us to for a more expert opinion than what we've already gotten. They did speculate maybe he's having seizures because of the abnormalities on his EEG a couple of years ago. We've already tried 2 seizure meds though, without benefit, and he's never had any movements that would suggest a seizure. I don't want to just keep guinea pigging him with different seizure medications and I doubt the neurologist does either.

This has reignited my feelings of helplessness and guilt. There may be something going on with him that I need to figure out. If I don't figure it out, he may be doomed to being unable to communicate, forever depending on other people, eventually strangers, to get his needs met. I'm terrified he will be neglected or abused. At five, he's essentially functioning at the level of an average 12 month old in most ways. And if we did figure something out that could change this trajectory, which I seriously doubt, I'll always be hating myself we didn't try harder and figure it out earlier.

Anyway, this has really driven home to me just how powerful a biomedical (quack) doctor could be. Our son has seen a pediatrician, child psychiatrist, 2 child psychologists, geneticist, 2 behavioral therapists, a neurologist, and multiple speech and occupational therapists. None of them have really generated any answers or successful solutions for how to help my son learn and develop. Seems like we're at a dead end basically. It would be really seductive to come in contact with a confident professional, who seemed to have answers and gave us concrete instructions and recommendations. Wife and I are way too skeptical for this kind of thing, but I can see the appeal.

Gewy, I don't know if you've seen it before, but the book Autism Breakthough has had profound results in our house.

My son was having tantrums that we're getting worse and worse over the past few months. The chapter in Autims Breakthrough having to do with dealing with tantrums had results so rapid and amazing I would call them miraculous if the book didn't explain exactly why they work. It's like he's a different kid in some ways, but without changing his fundamental self (which is a generally kind, sweet and above all passionate child) Best of all, there's no tinctures or special diets or special tools required.

The author makes some claims that may or may not be universally repeatable, but for us it was a godsend. If you haven't tried it yet, I'd encourage anyone to give it a look with an open mind.

Just a quick funny. Owen was home sick today with a cold, and we were chilling out on the couch when he turns to me and starts doing compressions on my abdomen while chanting C - P - A, C - P - A. Perplexed, I turned to him and asked him if he meant CPR? He said yes, you are supposed to do it when someone won't wake up.

Guess the little guy was learning CPR at school. Needs some work on his technique, but makes his ER Nurse dad proud!

Hi, been lurking in here a bit but I read this and thought it was worth sharing... Seems hopeful to me that the world is coming around a bit.

http://news.microsoft.com/stories/pe...
Unique Microsoft hiring program opens more doors to people with autism

I've been thinking about this type of situation for a while now. I've been out of work for nearly two months now, and only just today found an opportunity that might work out, at about half to a third of what I was making at Comcast (from $70k/yr, to a job that pays $10-$14/hr per their posting). Considering the fact that I've heard nearly nothing back from the other 50 or so applications I've put in, I'm going all out trying to get this job just so my wife and I can not declare bankruptcy, but pay wise it's a bit of a blow to the ego.

Several applications I've filled out specifically asked if I had a disability, defined as something that impacts a major portion of life, and they all mention autism. I'm fairly certain I have Asperger's. I show a lot of the classic signs, and any online test I do shows me way beyond probable. It certainly affects my life, as I can quite easily say that this forum and Reddit are literally the only form of social interaction I get. So I think I could say I have a disability, and maybe use it to make my resume stand out on that factor at least. But I worry that because I don't have a diagnosis, I could get called out on it.

On Friday I have an appointment for anxiety (long overdue), and I think I'm going to ask if it's possible to get tested through the military system. The last time I asked the doc completely blew it off, but hell, new duty station, new doc, maybe it's worth a try again.

Is this the callback you got during another interview? Good luck! And I wish you luck as well with the anxiety and diagnosis appointments.

Alex does seem like your son, E-P. I find him reciting things he learned or heard at school more and more.

concentric wrote:

Is this the callback you got during another interview? Good luck! And I wish you luck as well with the anxiety and diagnosis appointments.

That would be the one. Not sure if I'll get a call back on the "oh sh*t" interview. The worst part is, if I had just answered the call the app would have paused the interview, but it happened right as the recording started, and completely caught me off guard. The first question kind of threw me and I found that minimizing the app paused the interview, so I know it would have worked. The first question being what excited me about [company], and it had been long enough that I forgot what company and job the interview was for... I had to go look it up.

Overall, even with the cut in pay though I think it would do me some good to get out of the cable industry. It's not an easy industry to work in (very high divorce rate at all levels, extremely stressful even on good days), especially when every other day the company you work for is doing retarded stuff that makes it into the news. With having to be the primary caregiver for my boys now, any job where the hours are 0700-when you're done is not exactly in my best interest. I ran that schedule for years before kids, and was only able to stick with it because my wife handled everything with the boys. I just don't have that option anymore.

My wife shared this one with me. It certainly matches our experience.

Definitely matches mine too, except my boys seem to have skipped the memo. Sometimes I wonder if they're hyperactive.

I haven't been posting much in this thread, because really it feels like there isn't much to update. It's the same stuff, day in, day out, and there seems to be little hope of change at times. At four and a half, my eldest is still non verbal, not potty trained. Our ABA supervisor thinks he also has mental retardation. I'm not too sure about that, because there's little to what explain it (his birth was utterly uncomplicated, the MRI is clean). He has his good days and then there are bad days when the going gets really rough for everyone. In March, we spent a week in the Netherlands at our ABA supervisor's institute. It's so frustrating, because he made pretty good progress in a week, and we feel that that "intensive" week should be the normal routine. But finding people to work with Matt have been difficult to say the least. We had two ABA therapists we had been working with since February and who came with us to the Netherlands to learn from the supervisor and work with us. One of them quit a week later, and the other one is incompetent, to say the least (basically tells the supervisor "I'm good, I've seen what I needed to see" when she should be soaking in every bit of info). We paid for their expenses during this trip, so we're not exactly pleased.

The only bits of good news in all of this: my youngest seems to be progressing faster than his brother ever did, which is both encouraging and disheartening. Encouraging, because we're hoping life will be simpler for him than it will be for his brother. Disheartening, because it just underlines how far behind his brother is. His vocabulary is increasing even though he's a bit unintelligible. He has major behavioral issues though, and although the day care has been telling us everything is fine, they told our ABA specialist that he's been throwing major tantrums, more so than the other kids, and has been very difficult to handle for the team. My husband's morale definitely took a hit after that.

The very good news, however, is that Matt apparently has a spot in a specialized ABA institute which will start taking him on part-time at the end of May, and full-time once school is out (he's been going to school in the mornings and some afternoons since December, for all the good it does him - the government appointed "helper", is worse than useless, although I can't fault her, since she knows nothing about kids on the spectrum). We're hopeful, although cautiously optimistic would be better. We're still waiting for the other shoe to drop, as if it were too good to be true.

Anyhow, that's where we're at.

That sounds extremely frustrating, Eleima. I am hoping that at some point, your situation will improve.

Thanks Concentric, it most definitely is. We're crossing our fingers for this institute though. As long as it hasn't really started, there is a sense of trepidation, but it should be awesome, for all of us.

I am always happy to try to help. What I find a comfort with my son is seeing the progress that he has made over the past school year. Structure has helped a lot. As much as I love and enjoy him, I can't give him as much structure as he needs. Perhaps Matt will benefit from the structure of the ABA institute he'll be attending.

We had Alex's IEP meeting today. What troubles (and ANGERS me) is that some bullying has appeared. It's on the lines of playground teasing, like taking his hat. That's not so bad, overall. But it's when other kids get him to say things and then laugh at him for saying them - I am furious. The teacher and para have tamped down on it, but why didn't I know about this earlier? And what are they getting him to say? He's too naive and trusting (and, of course, autistic) to comprehend that these kids are doing this out of sh*ttiness. I hope karma is lying in wait for these little creeps.