Autism thread

Autism Speaks posted a page with several videos simulating sensory overload for people on the spectrum.

Thoughts?

ETA: my son is really affectionate, esp. with people he's familiar with. He smiles and laughs a lot, and makes good spontaneous eye contact. "Big hugs" are something he loves.

I had seen Carly's video before. I can empathize with the onslaught on the senses that spectrum folks experience, albeit on a much smaller scale then them, and can point to numerous times I've been in crowded places with lots of commotion and became overwhelmed when I couldn't even hear myself think. To think that they experience that on a far greater degree and also deal with overload of other senses on top of that is unfathomable.

I'm glad to hear your son is becoming more in tune with his emotions, concentric and have no doubts that he will start to branch out being comfortable around people he isn't familiar with.

This is a bit long but I really wanted to gush a bit about some things my son did the past few days.

First, my wife works at a large health insurance company and they have a preschool on premises. My son has been there since he was 4 months old which has been incredibly convenient with my wife being able to check in on him and ensure therapists came on-site to help him. So he's 4 now and on Friday was a "Have Lunch with your Kid" day at my wife's work. She brought him down to the cafeteria and let him pick out his own lunch (hot dog, mac & cheese, apple, juice). She said despite the place being packed (dozens upon dozens of people), he wasn't phased and was even walking around the cafeteria on his own talking to people, asking them what they're eating for lunch and if they like it, and just being incredibly social and interactive.

On Saturday my wife went to a store which left me home with Emile and Maya (18 months). I was in the kitchen making lunch when Maya started crying. I went in and asked Emile what happened and he just couldn't get it out, "Ummmm, ummmm...she ummmm.." with a look on his face that said he might have done something he shouldn't have. I tried asking him if she hit him (she's in her hitting phase right now) and if maybe he hit her back but he just couldn't get any words out. I ensured him that while hitting her back is not okay because she's small that the most important thing is to tell me the truth of what happened. I'm sure it might have been too complex of a concept for him but I'd rather him try to understand than dumb it down as if he's not capable of understanding. Anyway, the situation wasn't revolved and apparently he knew I was a bit disappointed that he was standing right next to her yet couldn't explain to me what happened. That night, my son requested that wifey take him to bed (I usually put him to bed, read him stories, sing songs, etc. while wifey puts down Maya). When my wife asked him why, he said "Hmmm. I think me and daddy need some space." It displayed a self awareness I think that is more mature than his age would suggest and also revealed that he has a very acute understanding of emotions. My only worry is that he may dwell on such things too long and depression could be the result as he is a very, very sensitive boy. So how to teach such a child not to dwell is the next hurdle.

FSeven wrote:

Pur - you're son most definitely understands far more than you think. Just because his output seems incoherent does not mean that he hears and receives information the same way.

I know. I think I worded my response poorly. I always knew he had a decent understanding of what was happening around him, but this was a realization that his understanding may be close to on par with his brother at that age. His brother has always been above average when compared to the other kids his age. We found months ago that when we couldn't understand the babble, we'd ask him what he was saying, and he'd repeat the exact same babble. We knew this was him trying to exchange an idea, and it was like there was a language barrier between us. He could understand and respond to us appropriately, but he was using sounds that we couldn't recognize that meant a specific idea to him. Now I think that language barrier is coming down, and it was sudden and unexpected, so it caught me off guard.

The second video is a decent portrayal of what I feel like outside, which is kinda funny since I have a job that's exclusively outside now. I spend extra money for transition lenses in my glasses, and yet I still have to close one eye when I'm outside because it feels like my brain is about to explode if I have both open and it's halfway bright out. On top of that, I keep my eyes focused on the ground in front of me because if I look up, I'll get off-balance and I can't walk straight. The first version felt odd to me, because without realizing it, I was glancing at all kinds of little things in the video he wasn't focusing on. And the whole time I'll be really alert to any sound around me. Someone honking a horn is damn near torture for me.

All of this together makes me feel like I'm about to have a panic attack. My blood pressure will go up to the point that I feel it, and I'll get short of breath. I'll start consciously scouting for routes to escape to if I feel I need to. I start to feel like everything's crushing down on me.

This all is especially bad when there's people about, because sometime's it's not sight or sound, but people's intentions mixed in to the mix that really pushes me over. If I'm in a crowded store, or a heavily populated public place, people getting close behind me, pushing in front of me, blocking my path, etc, can actually get me to a point where I literally retreat. I've had to do this with a cart full of groceries once during a holiday and I just couldn't handle it. I feel like I have some instinct that people are inherently dangerous and actively hostile against me, and I feel so unsafe that I have to get out.

Wow. I appreciate your writing this, because it must have been painful to do. And it must be a lot to deal with every day.

It's hard to tell how much of this my son experiences, but I would guess it's similar. I do see him struggle with white noise or loud, sudden sounds, and he has a harder time processing instructions or conversations when we are outside in a new place. For example this happened when my husband took Alex out to a kite-flying program Saturday. It was the first time a stranger asked if he was autistic. Though I imagine that his Neurodiversity t-shirt might have helped. I got one as well to match.

I hope that you can keep finding ways to work through this. It has to be exhausting.

Not really painful, mainly because it's an every day thing. It sucks in the moment it's all happening, but when I'm in my home where I'm comfortable, and I have a lot more control over my environment, it's pretty easy to talk about. Honestly, finding that I'm not alone in a lot of this really helps more than anything.

I've slowly been trying to find someone to actually test me, so I can officially have the diagnosis and start therapy myself, but it's really difficult dealing with my insurance at the moment. Just finding out the high probability that I have ASD has helped me a lot in dealing with my issues, so I'm guessing some active therapy and a diagnosis will take it a step further. Unfortunately, the three network providers Tricare lists when I do a search on their site are all local military bases that only see active duty personnel. Doing a search for non-network providers on their site doesn't bring up any results, even though I know there are therapists in the area that take Tricare. I've reached out to a few therapists in the area that say they take Tricare (found doing a google search), but none of them were taking new patients.

Things are a little better here today, but we're on pins and needles waiting for things to go bad. He's so emotionally labile right now.

Anyway, I realized we unintentionally biased our gluten and casein free diet experiment by starting it when he was at his worst. Most likely things will return to average and a less skeptical person would be convinced it was the diet. Even we will probably be too nervous to stop it after the week from hell. No wonder people are convinced of the efficacy of all these treatments with little good evidence.

I think I should look into getting a weighted blanket. I had a good day but am having a hard time right now and the blanket burrito is not really cutting it.

gewy wrote:

Anyway, I realized we unintentionally biased our gluten and casein free diet experiment by starting it when he was at his worst. Most likely things will return to average and a less skeptical person would be convinced it was the diet. Even we will probably be too nervous to stop it after the week from hell. No wonder people are convinced of the efficacy of all these treatments with little good evidence.

Not sure how you're starting, but in my experience, it's best to plan meals without any kind of bread item rather than to try to sub in special GF bread items. A lot of that stuff is pretty harsh, especially for someone who's used to wheat based products. My oldest and my wife are both gluten intolerant, so there's not much choice for us. About the only thing I'll cook that's a special GF product is pasta (Schar brand is our favorite). Most of the pastas pretty much don't taste any different once you cook the hell out of it and throw some sauce, chicken, and broccoli in there. The Annie's GF mac&cheese is decent as well, just throw a little extra chedder into the sauce mix while it's still hot. Otherwise I stick to a protein, a serving of vegetables, and a fruit. Occasionally I'll throw in some potatoes as a starch.

Tristan has what we're having, so at home he's mostly GF anyway. He gets gluten products at school, and typically if we eat out he'll share with all of us so he'll get it if I order something with gluten, but he's pretty accustomed to that type of diet, so it's not that rough.

clover wrote:

I think I should look into getting a weighted blanket. I had a good day but am having a hard time right now and the blanket burrito is not really cutting it.

Have you tried a good heavy quilt? It's what we keep on our bed, and I'm not sure I could go back to a blanket.

I just ordered my son a weighted blanket from Dreamcatcher Weighted Blankets. There's a 10% discount code through the end of the day April 30: April2014. I saw a number of positive comments on them in several forum threads on wrongplanet and the like. I'll let you all know my thoughts when it arrives in a few weeks. You get to customize the blanket, so Alex will be getting Thomas the Tank Engine with a dark backing fabric.

ETA: CBS Sunday Morning profiled Owen, the young man in the NYT article I linked a couple of pages ago. I liked it. Something I especially responded to was what his mother said at the end, that Owen (and others on the spectrum) had experiences and an inner life as rich as anyone's, but for them the difficulty is in expressing it. I really see that in my son.

concentric wrote:

I just ordered my son a weighted blanket from Dreamcatcher Weighted Blankets. There's a 10% discount code through the end of the day April 30: April2014. I saw a number of positive comments on them in several forum threads on wrongplanet and the like. I'll let you all know my thoughts when it arrives in a few weeks. You get to customize the blanket, so Alex will be getting Thomas the Tank Engine with a dark backing fabric.

ETA: CBS Sunday Morning profiled Owen, the young man in the NYT article I linked a couple of pages ago. I liked it. Something I especially responded to was what his mother said at the end, that Owen (and others on the spectrum) had experiences and an inner life as rich as anyone's, but for them the difficulty is in expressing it. I really see that in my son.

This stuff hits home big time. Our Owen is "obsessed" with Thomas we don't limit exposure at all, in fact almost everything Owen does involves Thomas. Most of his early vocabulary revolved around Thomas, he can name every engine at a glance.

Sometimes I hate reading/watching anything about Autism. Idiotic I know, but sometimes I think Owen's Autism will just disappear one day, and this neurotypical kid will wake up and do everything I wish he could. It's videos like this while informative and important, bring me sadness and remind me that this damn diagnosis is here to stay. I only hope my son can function as well as the Owen in the video.

My son had his 4th birthday party over the weekend. He had a lot of fun! The work to get him to know his age has paid off, as he can tell it to people consistently. He played with adults and children and definitely got the idea of presents. So El Producto, I'd guess that your son will get there really soon.

Here's a picture of him listening to everyone sing him "Happy Birthday." He was beaming with happiness.

IMAGE(https://farm8.staticflickr.com/7337/13984356227_d37b617849.jpg)

concentric wrote:

My son had his 4th birthday party over the weekend. He had a lot of fun! The work to get him to know his age has paid off, as he can tell it to people consistently. He played with adults and children and definitely got the idea of presents. So El Producto, I'd guess that your son will get there really soon.

Here's a picture of him listening to everyone sing him "Happy Birthday." He was beaming with happiness.

IMAGE(https://farm8.staticflickr.com/7337/13984356227_d37b617849.jpg)

What a great picture! He's just beaming!

Here's a nice piece from the NYT Parenting blog, "The Language of Autism: Disease or Difference?"

ETA: We are having really nice results with PCIT. If you have it available to you, check it out. My son and I feel so much more connected to each other now, and his therapists are noticing a positive change in attention span and how well he expresses himself.

Wikipedia entry

The UC Davis site - our PCIT therapist specifically recommended this as a good source of information.

Sometimes we forget about autism. Years ago we ate at Red Robin and we told them it was my twins birthday. They came out, gave each twin a little cake and started to sing. My one son took his fist and smashed the cake. It splattered all over.

Today (8 years later) he still recalls that incident and tells us it was too loud.

So folks on the depression thread suggested I pay you guys a visit. How does one find a forensic psychologist?

ETA: Weighted blankets sound so awesome. I'm not sure what their intended use is, but I know I sleep better with thick blankets on me because I need the weight in order to feel comfortable. Even if it's ninety degrees out, the weight comes first.

EDIT 2: I just had a conversation with my mother. She told me that she recently saw the report that was done on me when I was little, and that it said I had semantic-pragmatic disorder. I told my mother that I suspected I may have been diagnosed with Asperger's Syndrome if it had existed in the 80's. She said she often wondered herself, but thought that my symptoms weren't as severe.

When we finish unpacking, we'll figure out where that report is, and I'll get a bigger clue. I'll send it to the director of the therapeutic nursery to jog her memory, and perhaps she can give me some more insight. What would be even better is if I could get a hold of the neurologist who wrote that report.

EDIT 3: OMG. Drs. Rapin and Allen are the ones who actually coined semantic-pragmatic disorder, and apparently, I was described in one of their books. They were a big part of my childhood, and I had no idea they were world-renowned.

Dee,
Wow! I am so glad you have this information! My son's diagnoses are ASD and semantic-pragmatic language disorder as well. So I thought what you wrote in the other thread seemed very similar to what I see in him. I'm glad you are here!

ETA: we all had such a fun time at the zoo today. My son was eager to feed the lorikeets and giraffes until it was his turn, and then he got scared. So I did it for him. The noise, color, and movement of the lorikeets were a little overwhelming for him, but now we know. The merry-go-round and playground really settled him down.

We'll be going to a different zoo in Iowa in a couple of weeks for a night specially set aside by the UI Children's Hospital for special-needs children. There are lots of activities planned during the event. I'm looking forward to it.

IMAGE(https://farm4.staticflickr.com/3717/14259541572_7e96fb2069.jpg)

Yes, I am the woman sitting with him on the bench.

Well, it's been a month, and we're on the verge of calling the GFCF diet a failure.

Helmet still isn't here. First one ordered was too big. Second, too small. Third will be here next week.

We've been given the task of documenting how many times he hits his head and during which activities he's doing it all day long. Since he hits his head 100's of times per day, that's going to require lots of effort and concentration. Not fun. We'll probably have to get one of those click counter things. This is not something I would have ever imagined having to do as a parent.

He's hitting himself harder and harder these days. Miserable to hear that thumping sound all day long.

And no one's getting enough sleep.

Appointment with child psychiatrist next week. We will be asking to try some kind of medication. I just wish I were more optimistic...about the near and long term.

I'm honestly starting to get these awful thoughts like, "autism has ruined our lives". And that's completely independent of whatever stuff Autism Speaks is putting out these days. So no point in blaming them.

I guess you could say Tristan eats a low gluten diet, but that's really only due to his older brother having Celiac's. He gets wheat products at school, and I'll normally share my meal with him when we're eating out, but other than that he eats what's cooked, which is GF. It's a pretty hard diet to stick to, so if you're not seeing results, I'd say scrap it.

I can't say I know how you feel, because we're still pretty early in, and Tristan is responding fairly well to therapy. He has fits where he'll throw himself to the ground, and he occasionally gets hurt thrashing around, but I'm not sure if I could handle the head banging without having the same thoughts you are.

Even so, we started a savings account for Tristan for later on in life, in case he's severely disabled and unable to hold employment. Neither of us want Sabastian to ever have to carry that kind of burden, so we figure with both of us getting promotions recently, it's time to put money away. Hope for the best, but plan for the worst.

I'm surprised that Dr. Rapin, who is retired, responded to me so quickly:

Dr. Rapin wrote:

To come back to your question, I recall you were one of those children who have autism features when young who "recover" and do very well, although they may still have mild social or other behavioral issues. In fact you were Dr Allen's favorite poster success child. One of the features of these "recovered" kids is that such children tend to be bright, which I remember well that you are, and to have good parents able to implement what the nursery staff taught them about management of difficult to rear children, which you did. I am now retired but used to meet your mother from time to time in the neurology hall of Montefiore Hospital who brought me up to date each time with how well you were doing educationally and otherwise....

Indeed today you might have been labeled Asperger syndrome or high functioning autism, labels that no longer exist in the newest revision of the Diagnostic and Statistical Manual of Mental and Developmental Disorders (DSM-5) prepared by the American Psychiatric Association, because their diagnostic criteria (all behavioral) were too broad and controversial. Now all disorders are grouped as Autism Spectrum Disorders (ASD) with a wide range of severities and associated deficits.

I guess that makes it sort-of-official: I'm in the spectrum. Such a weird thing to find out two days before age 35.

o/

I often wonder if I'd land on the spectrum if I was properly diagnosed. The annoying thing is, my brain has me pretty thoroughly convinced it's just me trying to be a special snowflake. I only really just thought about it again because I've been speaking to someone who was officially diagnosed with Asperger's, and as she listed off the things she has to deal with, I noticed I was mentally putting little check marks next to a lot of them as she went through. That and doing my semi-regular scoot through the depression thread and seeing the topic come up. But I'm still really uncertain, to the point that I'm fairly convinced I shouldn't even be posting this. Gah...

I think we've all had those thoughts at one point or another, gewy, even with less severe situations. It sucks. It sucks to have to feel that way about your own child. What sucks even more is that there is no "cure". No clinical procedure to alleviate the banging or the tantrums. It's like trying to feel around in the dark for a matchstick when you're in a room with nothing but needles. Emile would probably classify like Dee (as a spectrum person who has "recovered"...btw, I don't want to say congrats? but I'm happy for you that you have discovered something about yourself) but he still has moments that make us feel like we're in that dark room again and are completely lost.

I think for many of us (parents), one or the other had some sort of spectrum qualities while growing up.

A coworker of mine, who was very quiet and seemed a little socially awkward was diagnosed with Asperger's when he was 43 years old.

Big day today. Émile went to his kindergarten school to take his initial placement test. Wifey went with him and said he did wonderfully. He is 4.11 years old and tested as a 5.8 year old. He has two areas we need to work on: fine motor skills (gripping writing instruments) and comparative language (comparing sizes of objects, etc.). After all was said and done my wife informed the teacher of his diagnosis at 15 months old and filled her in on how far he has come and the final diagnosis of his pediatric neurologist (he will always have some minor quirks but for all intents and purposes he is a neurotypical child).

It's pretty big. After years of worry and uncertainty I think we really feel for the first time that he will be okay. Our focus is now on helping him understand how his brain works and helping him identify situations that will cause him to melt down and how to get through it, as well as working on his social skills (still has some quirkiness and improper behavior as well as some semantic-pragmatic speech issues). That is stuff for another time. Right now we're going to celebrate this victory.

Some pics from this weekend at the Field Station: Dinosaurs park and then watching the Memorial Day Parade with Grandma & Grandpa

IMAGE(http://i.imgur.com/l2XFMa4l.jpg)
IMAGE(http://i.imgur.com/XPojSmal.jpg)
IMAGE(http://i.imgur.com/iJdGNtKl.jpg)

That's awesome, FSeven!

FSeven - great news! You and your wife have put in a lot of work with Emile, and it's wonderful to see it paying off! He is lucky to have you two as his parents.

I love the pictures! He is really having a grand time in all of them (and looks such an adult in the middle one).

Something about Alex that is really charming me: his big new phrase is, "Me too, Mommy!" whether it makes sense or not. He is such a sweet little fellow.

At this rate, this will be the gewy self-pity thread, but I really feel down when I see these threads with people playing video games or building lego with their 4 year olds. I'm doubting I will ever be able to experience that level of interaction with him and it sucks. He can't even stack two blocks together.

Edit: Violence starting to become an issue now. Whenever he's picked up, odds are high he'll randomly punch our face with both hands. My jaw is still a little sore from earlier. He punches, slaps and hits pretty much everything, including himself. He's really getting out of control in general. Any useful suggestions? I don't think he's cognitively capable of understanding a "time out".

Also, there's a reason I'm posting at 2 am. He woke up 30 minutes ago shrieking and jumping around like I'd imagine a monkey on cocaine. I'm afraid he'll injure himself he's so hyper. He'll probably fall back to sleep around 4-5 am based on our experience the last few weeks. This is his new normal.

My wife spent the entire day with him today (no school). She started asking me if we could consider residential placement in a few years if things continue on this path

concentric wrote:

Something about Alex that is really charming me: his big new phrase is, "Me too, Mommy!" whether it makes sense or not. He is such a sweet little fellow.

That's adorable and is also how Emile got started down the path of learning how to express himself. Applying it correctly will come with time but Alex being able to use a phrase which expresses the ability to relate to another person is no small matter!

gewy wrote:

At this rate, this will be the gewy self-pity thread, but I really feel down when I see these threads with people playing video games or building lego with their 4 year olds. I'm doubting I will ever be able to experience that level of interaction with him and it sucks. He can't even stack two blocks together.

Edit: Violence starting to become an issue now. Whenever he's picked up, odds are high he'll randomly punch our face with both hands. My jaw is still a little sore from earlier. He punches, slaps and hits pretty much everything, including himself. He's really getting out of control in general. Any useful suggestions? I don't think he's cognitively capable of understanding a "time out".

Also, there's a reason I'm posting at 2 am. He woke up 30 minutes ago shrieking and jumping around like I'd imagine a monkey on cocaine. I'm afraid he'll injure himself he's so hyper. He'll probably fall back to sleep around 4-5 am based on our experience the last few weeks. This is his new normal.

My wife spent the entire day with him today (no school). She started asking me if we could consider residential placement in a few years if things continue on this path :(

I can understand how you're feeling, gewy. There was a time when I would worry myself to the point of vomiting because my son couldn't really talk or do basic things and was perfectly content to sit on the floor lining up toys in a very OCD fashion or taking a toy truck and spinning it's wheels for hours if we let him sit uninterrupted. If someone had told me at that point that our son would be where he is today, I wouldn't have believed them and would have had to hold back the urge to slap their face for even presuming to know my son and what our family is going through. From what I've gathered it seems that your son has a more severe case than many others in this thread and I can only guess how it must make you feel to hear some of these positive stories.

Back when my son was spinning wheels, chewing everything in sight, and not really communicating, he liked to headbutt things. People, walls, you name it. There were a few things that helped us get out of that mode. The first was understanding that it wasn't a compulsive behavior and that something was causing him to behave that way. Overstimulation (too much noise was our sons big trigger) and an inability to communicate (he wasn't talking much if at all) were the two big factors. Getting an iPad with some apps that have pictures to help nonverbal children communicate helped. Telling him to physically show us what he wanted helped (he would grab my hand and lead me into the kitchen and point to the sink which meant he wanted a drink) as well as making up some index cards with pictures of common things (potty, bath, eat, drink, play, TV). Once he was able to replace the pictures for simple actions like EAT with the word, we made up cards for more specific things (instead of just a TV, there were two cards - one for Yo Gabba Gabba and one for SuperWhy!). I also picked up two different types of sound suppressors for him; an over the ear headphone style and some small earplugs that fit inside the ear that he could use whenever it was getting too noisy. The last time he felt the urge to use them was last July 4th. With the sleeping, my son has always had background noise. When he was younger it was my iphone on the dresser in his room with an app that played sounds of rain. As he got older I made a CD of very calm Rockabye Baby songs (total runtime was about 90 minutes - I can make you a copy if you like) that I pushed play on just before we left his room for the night. He still listens to it occasionally. The idea was to give his mind something to focus on. Given his affinity for patterns and how he always seemed to pay attention to music, providing him something rhythmic to create an auditory pattern to focus on during bedtime seemed to make sense. That was the theory anyway and I have no idea if there is any clinical validity to it. All I know is that it worked.

I also don't want to take any credit away from his OT and his speech therapist. Honestly, there are not sufficient words in the dictionary able to describe just how vital to his progress they were.

gewy wrote:

My wife spent the entire day with him today (no school). She started asking me if we could consider residential placement in a few years if things continue on this path :(

There's no shame in realizing your limits. Have you also looked into respite care?