A New App May Help With Early Diagnosis of Autism

A new video analysis tool may help spot early signs of autism. The software, which is currently under development as a tablet application, tracks and records infants’ activity during videotaped autism screening tests.

Results show the program is as effective at spotting behavioral markers of autism as experts giving the test themselves, and the software performs better than non-expert medical clinicians and students in training.

“We’re not trying to replace the experts,” says Jordan Hashemi, a graduate student in computer and electrical engineering at Duke University.

“We’re trying to transfer the knowledge of the relatively few autism experts available into classrooms and homes across the country. We want to give people tools they don’t currently have, because research has shown that early intervention can greatly impact the severity of the symptoms common in autism spectrum disorders.”

Read the full story here.

Photo Credit: Tia/Flickr

Autism looks different in female brains

The results, from brain scans, also suggests that a controversial view of autism, as an extreme version of the male brain, is only half correct
AUTISM seems to cause female, but not male, brains to look more masculine. This suggests that one controversial view of autism, as an extreme version of the male brain, may need rethinking.

Simon Baron-Cohen at the Autism Research Centre in Cambridge, UK, has found that men tend to be better at systematising tasks and females better at empathising ones — though it’s unclear whether these differences are innate. As people with autism tend to be good systematisers and below average empathisers, he has argued that autism may be an extreme version of the male brain, or EMB.

Baron-Cohen’s team used MRI scans to look for differences in the volume of various brain regions in 120 adults, half men, half women, half with autism, half without. Differences between females with and without autism were similar to the differences between ordinary male and female brains, supporting the EMB theory. However, the brains of males with autism were no more male than those without (Brain, doi.org/nff).

“This is unexpected and will lead to a modification of EMB theory,” says Uta Frith at University College London, who was not involved in the research.

This article appeared in print under the headline “Autism looks different in female brain” New Scientist Magazine

Braces! Day 2 SUCKS!!! or How to get Homunculus to move out…

My poor munchkin is now with a metal smile! I did everything possible to persuade him how he will have the most handsome smile and his teeth will be aligned and beautiful.. and he really bought into it the first day… But today (day 2) has been a nightmare! He woke up in the middle of the night, he didn’t eat dinner, he hardly touched his breakfast, he complained and  complained, while I was trying to keep his spirits up and tell him it will get better very soon. 

Not even an hour after I took him to school, as I am driving in a manic 8am traffic jam on a 5 lane freeway (why do they even bother to make 5 lanes… it doesn’t help anything. They even open an extra emergency lane in the morning. Who are they kidding?! Nothing makes this molases move.) But I digress. It doesn’t take much to get me there with traffic. 

So I got the call while I was in the longest stretch between exits. Something like 5 miles until the next exit. And when traffic is trickling down like a clogged sink with dirty dishes in it (yep it’s gross!) and you get a call that your child is crying with real tears and is in excruciating pain, and you can hear his deep voice (he went from a squeaky high pitch we were so concerned about, to a firm bass-bariton in a matter of weeks when he turned 12) in the background… All you can think of is my heart aches with him and I need to be there in this second, and this traffic is holding me back.

I called the office that I will be late, waited (impatiently) in a 50 car line to cross a traffic light on my way back to the school, while still on the phone with him and his wonderful teacher, stopped over by the Orthodontist, Starbucks, and RightAid drugstore to get my supplies! 

I made it about 30 min later (for a distance of 5 miles that’s almost the speed of light in morning traffic) with a grande vanilla bean frapuccino, no whip (just the way he likes it), a bottle of Advil, Orajel, and a mouth rinse. I found him in the most miserable state I’ve seen him a long time, in the nurse’s room. His face was covered in tears. The pain was pouring out of his beautiful eyes. My heart sank. Here comes, I can just feel that wave pouring over me… the GUILT!

“I made him get braces! What’s so wrong with his teeth. Look at my teeth, I had no braces and I turned out ok and people complement me on my teeth. And now, I made my baby suffer! LIke it’s not enough that he needs to cope with all his other Aspie related shortcomings, he needed pain! You are a cruel mother! You should go right back and have these torture instruments removed from his mouth. .. “

Oh yeah, I have mastered this one! I have made a true commitment to daily punishment of myself. You know how I know? Because I have a little helper in this one. Yes. Not a day goes by without that little devil creeping into my head, pulling up a recliner (he always has one handy, go figure!) and a cocktail and just sitting there, basking in the fire glow of my raging guilt-tripping! And because I provide, he’s grown and is developing nicely. I’d say he is soon to be in the 90th percentile and growing. Yeah, I might as well call him my third child. And, oh, I have discovered, that I am so protective of him, that nothing can ever harm him. Anyone dare tell me that I should let him go and never look back – I am not a nice person with them. I find all the reasons (He helps me with the list) of why it has always been and always will be MY FAULT! Oh, yes, he’s there to stay! He’s got the food, he’s got the recliner, he’s got the constant supply of flaming guilty energy to keep him warm… Yes, I am growing my own personal Homunculus! Remember Faust and his Homunculus?

(this is a drawing of mine from some time ago, that I did name Homunculus.. thought it would fit here.)

 

Yes, except instead of the Philosophy stone, I have no idea, what will my dude help me discover? I have no idea why I’m keeping him so cozy. Well, he is a flatterer, for starters. He knows exactly when to throw me a bone and tell me I am doing the right thing, because I’m being easy (on myself and on my kids) and he’s rewarding me for that. “See?, you are being understanding and patient and supportive..That’s what you should do. You should let things happen, and at the sign of the first resistance, just stop, give in, and let him do it, so he’s not feeling deprived.. because remember, after all, it’s your fault that he is different, and now you have to pay for it. And pay for it you shall. Don’t worry. I’ll make sure of it every single day. I’ll find a little thing for you to feel guilty about so you don’t forget. Yep.” 

But then something miraculous happened. Just as I was about to tell Sam “Ok Baby, let’s just go to the doctor and have these removed.. ” I was touching his forehead and cheeks lightly to make him feel better, as he was drinking his smoothie, when he looked up at me and said: “Ok Mom, I think I can do it! I am a big boy! Link would do it!”  (Link is the one who he identifies with from Zelda.. – video games people! learn your video games!)

My mouth was still open, ready to say what Homunculus wanted me to say, but Sam, a.k.a. Link just shut him up! I couldn’t believe it! And I knew it, that at this moment, Homunculus just realized, it ain’t gonna be that comfy any more in that head… So, I think he’s packing now.. I’ll keep you posted! 

Meanwhile, after Sam finished his smoothie, I applied the orajel, gave him an Advil and a big hug, and he just took off, because “I have a big art project to finish! Gotta run!” he said. 

As for me, I doubt there will be a greater accomplishment anywhere else in my life today. I don’t think anything else can top that. 

Even the traffic is now somehow a much needed slow down in the rapids, that is my world. 

 

I figure if Tom Cruise can pull off braces, then we can too! 

Grow Out Of It, Will You?

When they say it’s World Autism Awareness Day, does that mean, everyone is now sufficiently aware? April 2nd, 2008, the UN announced that this would be THE day to learn more about autism. It was a big to-do. I was a producer at a major international TV network and we were going to cover this day, wall to wall! Programing was rich with actual autistic and Aspergers children and adults, experts, book authors, doctors, parents. I was thrilled to see so much attention as well as new information pouring out of the TV screen. I was so proud to have been an instrumental part in making this happen. Then, a year later, April 2nd came and went, and there was absolutely no mention of it. 

Stories have been coming and going, experts have agreed to disagree that vaccines are to blame partially for the increasing number of autism cases, children have miraculously “healed” while others have been accused of cold blooded murder

And on that note, I would like to point out to the media, that autism is NOT a mental disease! Had it been mental illness, there would have been a pill invented that would cure the aforementioned disorder… such pill is not invented as of yet, so would the media kindly cease the use of Mental Disease in connection with Autism and Aspergers !…. 

In a flurry of contradicting opinions, painful experiences and a myriad of “cures” or lack thereof, I can’t help but ask: what good has come of having a world autism awareness day? What has changed because the Empire State Building or some other building in Dubai, have been lit blue on April the 2nd, or that a woman has decided to keep her blue lights on a whole month in honor of autism? Do the stories in media, blogs, videos, films about it, changed anything.

Ummm NO, and paradoxically, the rate of autism diagnosis among school aged children has jumped in the last years. 

According to a CDC study:  Children aged 6–17 in 2011–2012 were born in 1994–200 (approximately) and would have been about ages 2–13 in 2007 when the previous NSCH was conducted. The estimated prevalence of parent-reported ASD for that birth cohort in 2007 was 1.16%.

Clearly, the awareness is now here. Loud and clear, we know that autism is prevalent. More children will be diagnosed with some form of autism spectrum disorder this year, than with AIDS, cancer and diabetes combined! 

Unfortunately, the awareness has done nothing to make the disorder more socially accepted. While some neurotypical children are completely and totally accepting of their ASD peers, parents  of neurotypical children continue to be “protective” of their children and either discourage, or find a more politically correct form of avoidance of children on the spectrum. And later, when the neurotypical children become neurotypical adults and neurotypical parents of other neurotypical kids, they will do the same – prevent and avoid contact with anyone who’s slightly different than their child…  Until, one day, they find out, their child’s quirky habits and lack of eye contact, are just that – autism!

As a result of this social lack of acceptance, the ASD children’s social ineptness is exacerbated, and their social inadequateness, magnified by the rules and punishments imposed in the public (and private) school system.

This may go against the grain of many “autism friendly” private schools and their supporters, but my personal experience with a number of them, is that not only are they poorly equipped to meet the special needs of their already struggling students, but they are also not helpful when it comes to counseling and creating effective and comprehensive IEPs (individualized educational plans) and BIPs (behavior intervention plans).  

In the light of the latest depressing statistic that one in 50 children is on the spectrum, what is a parent to do? You have three choices: public, private or homeschool. I have tried all three. There is no panacea, there is no one straight and definitive answer, because it will always depend on the PEOPLE who work with your child. Homeschool is of course entirely dependent on the parent. One would think, this is perfect. The parent can create the perfect program, teach it to the child in a perfect way… Not so much…

Have you noticed how even parents of neurotypical children complain how the kids don’t come with instruction booklets, and they have no idea if they are doing the right thing with their children.

Well imagine how a parent of a special needs child feels.

First of all, there is the guilt trip. No matter what religion you are or not, it is inevitable that your conscience will whisper in your ear night and day, that it must be something that you did, or didn’t do that contributed to your child being that way. 

Then come the different stages of acceptance. Speech is delayed, so you attribute it to various factors, from too many languages spoken in the household, to a stressful situation, or a dog barked too loudly close to the baby, and he got scared.. . Then you sort of start to see the signs, but you refuse to look at them, and more importantly, refuse to label your child. I mean WHO wants that?! It’s AUTISM, it’s not LICE! You can’t just shampoo it off, wish it away.. NO. It will stay with you, and your child and your family your whole life! 

Then it slowly starts to sink in, and the permanent heavy feeling settles in, that your child may never have a life on his/her own, may never have a family of his/her own, and the worst fear of all parents:

When you die… your child…no matter how grown up he/she is, will have NO ONE to take care of him/her! 

This is probably the most terrifying fear of all… You feel so helpless in the face of time and this.. this.. whatever this “condition” is, that deters you from actually meeting your child!

I saw “The Notebook” the other day. Hadn’t seen it when it came out. Unfortunately, the descriptions cable gives, have usually little to do with what the movie is about. Her Alzheimer’s onset in many ways reminded me of what Aspergers is about. Except Alzheimers takes away someone you already knew. They had these glimpses of her real self, tiny increments of time, when she was “back” and could talk normally and recognized her husband. Well my son recognizes me, and everyone around him. He remembers everything he’s ever seen or read. We have long conversations about his interests and characters he plays with, or music he’s learned or listened…So in that regard, we are lucky. He has memory for all of us put together.  But will I ever have a conversation with him about how he feels about something? Will he ever grow out of it???

It’s a beast of a “condition” I must say… It is unpredictable as the March weather we have right now. There are some months, when he “outgrows” certain traits in leaps and bounds! He’s interested in cool things, he knows everything there is to know about the American Presidents, the planets and galaxies and stars, and most recently about guitar, guitar players since the 50s and their biographies. These are the times he usually excels in school, and has a mild and friendly demeanor and is extraordinarily engaged. 

These however are followed by periods of irritable disposition, lack of interest in anything school related, resistance to doing things he didn’t mind before – like writing his homework on his own, reading aloud in class. 

This outgrowing thing, is sort of a tango that we keep dancing during the years – two steps forward, one step back. 

My favorite is when friends who have no children on the spectrum, or any children what so ever, are quick to offer advice on how I shouldn’t give in and spoil him with satisfying his wishes or spending time with him when he asks. And I am yet to find the most polite way of telling them to go …… themselves. One doesn’t necessarily want to burn bridges, but if the “awareness” we’ve created in the past five years is still not effective, then it’s time for a different campaign.

That’s why I am attaching a blog post by someone who is going through this every day. Read their experience and spread the word.

It’s not only about acknowledging the problem and making people aware, it’s about looking for a solution, each and every day! 

And in the meantime, teach people to be tolerant, accepting and welcoming differences of any kind! 

 

Temple Grandin Goes on a Journey Inside Her Brain

Fascinating brain imaging done on Temple’s brain at Carnegie Mellon University. The discovery is incredible, and it explains so much about why autistic and aspergers kids would be brilliant at some things, but lack the socially acceptable skills.. Worth watching and sharing with parents of neuro-typical kids!

NY bus driver catches an autistic girl, 7, in three-story plunge – U.S. News

It’s a hair raising story, the video will make your heart stop, but it has a happy ending… But who is to say it won’t happen again.. What a hero this man is! I am curious what made the girl go out on the ledge? Will they ever find out?! Praying for her parents and all parents of severely autistic children.. http://usnews.msnbc.msn.com/_news/2012/07/17/12786112-ny-bus-driver-catches-girl-7-in-three-story-plunge#.UAVaCcLT_Qg.twitter

Aspergers Children and Poor Eating Habits

Aspergers Children and poor eating habits Great ideas on how to “sneak” healthy foods into staples, in this article. Click on source at the bottom to open it. Sam is 12, but all he ever wants to eat are the worst possible things! His limited menu consists of: Fried chicken Mac and cheese Spaghetti and butter Bread and creamcheese On a rare occasion he may try steak and cucumbers. Two fruits: strawberries and cantaloupe, have his attention.. That’s pretty much it.. source

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Who Can We Trust?!

Today I saw a woman post on Facebook, how her neighbor’s 13 year old Autistic son likes to jump on a trampolin… entirely naked.. She shared how she likes the boy and the family and all, but she’s not really into watching him “flap his private parts..he’s not 3 .. you know what I’m saying.”

I had the almost irresistible urge to post a comment, but I sat on my hands and decided to just leave it. Then I sat and watched as the responses to her post started pouring in.  Ninety percent of the people who chose to respond to this, were LMAO-ing.. or ROFL-ing.. One mentioned that he is a foster brother of 3 autistic boys and he found this to be “totally inappropriate.” Ultimately, it did seem that all this post came to do, was to awkwardly entertain people on their lunch break.

When did that become appropriate?? Laughing out loud, rolling on the floor laughing, at the symptoms of a condition that doesn’t make a person less worthy than any of the laughing facebookers…

I am quite patient when it comes to all sorts of judgements, critique, advice and further “infringement” on my parental rights, as I deem it none of anyone’s business, thus not worthy of engaging in arguments about what I feed my child, if he’s spoiled or not (I do get a lot of these from usually women who have no children.. ) or if I should take him to this or that therapy.

My point is, the laughing ignorant people on facebook, have probably much worse “handicaps,” that they wouldn’t want seen in public, but they are quick to laugh out loud on something that is not even funny!

I feel I’m picking up steam, even though I started this post with the benign intention of bringing awareness to this not so rare “symptom” of overstimulation followed by undressing, in an autistic child/person. Getting rid of clothes is obviously not the most appropriate behavior in a world of paranoid neurotypicals, but I’d take it any day over self inflicted pain, or wounds, as I’ve heard of kids who do that to themselves in the worst possible way….

There have been many instances when I had to bite my tongue really hard to not snap back a nasty comment to a neurotypical child’s parent who thinks that no one notices how she removes her child from interaction with my son, thinking he may be contagious and autism may be a virus… I have sat on my hands and I’ve squinted my eyes, and I have inhaled and exhaled deeply and I have held my elbows, giving myself a tight hug.. oh yeah, all the techniques I’m trying to teach my son on how to handle anger-inducing moments – I’ve tried them first on myself.

One day we were at a pool in a beautiful hotel in a foreign country where we went for a week long trip. Sam found this little girl on a float and they started talking about .. I have no idea – toys, games, whatever. He was in the water and was pulling her float gently, giving her a ride across the shallow end of the pool.  The whole time they were talking about their important topics. I got so emotional watching him make a little friend, that I started get teary eyed under my huge sunglasses… I decided to just stay in a very close proximity, but not engage. Just wanted to see how they will interact. They were doing great! Until the parents arrived. They pulled her away, and asked him – quite aggressively I might add – what’s his name and where are his parents. He turned and pointed at me. I waved. They didn’t wave back…

At that time he was obsessed with geography. So he (appropriately) asked them where they were from. They told him the state and city. He immediately pulled all the statistics about it. He was telling them how big their city was, how many people live there, what sister cities in other countries their city has.. Their eyes were turning bigger and more worried, and they started backing up, pulling the daughter’s float faster and faster away from Sam. He kept telling them all he knew about their city and state, and walking after them, hoping to strike a chord of mutual knowledge, hoping he will be liked because he knows all these facts about their home town…

I realized that a problem is brewing as they were stepping further and further away.. I got inside the pool, walked over to him and hugged him, saying that they are in a hurry to go get dinner, but I am here, so he can tell me all he knows and I’ll gladly listen…

I kept my sunglasses on for a while, because now my tears wouldn’t stop.. And they weren’t the happy tears from before.. they were the black, sad, angry, roaring, infuriated, powerless, white-knuckled tears.. that nothing can stop, except an hour of punching a boxing bag…

How do I explain to the whole ignorant world that he is not “weird” “awkward” “scary” “suspicious” or any other sort of adjective they want to attach to my son and others like him… How do I tell them that the fact that they don’t know there is country Georgia, and my 10 year old does, speaks volumes… How do I tell them to just shut up and if they listen to what he has to say, they may actually learn something..

Now I feel the same kind of fury and compassion for the boy who took his clothes off, and for his parents.. They probably thought they can trust this woman being a close neighbor, who likes their son and spends time with him..

That same woman, who blatantly abused their trust and posted their daily pain for everyone to see and laugh at! They probably felt so relieved that this one person next door is someone who “gets” him… Aaah my heart just pains for them and how betrayed they are.. I don’t know who they are or where they live, and it certainly is not my place to tell them..

I am feeling that one hour boxing urge come again.. So I’ll leave it at that, and go to the gym. In the words of one of my new favorite bloggers from laughingtotears “We (Parents of Autistic Children) are already angry, sleep deprived, not socially well-adjusted, we know how to fight.” Do you really want to pick a fight with us?! 

I will reblog Erica and Lisa’s post just because it makes me laugh and cry and most of all because it makes me feel like I am not the only person in the world feeling that way.. and that’s ok!

The Negotiator

So life has gotten a bit busy and I have fallen behind on my blogging!

Sam has been one busy bee himself. With homeschooling now in full swing, we are getting in a sort of a routine, that he fits everyone. There is a sense of accomplishment in him when I come back from work and find him on his iPad. As soon as he sees me walk in, he wants to tell me all he learned about the human body, diseases, the new tunes he listened to, and last but not least, to remind me of what is the next lego superhero he wants to get…  He is a master builder of these thousands of tiny pieces. 

Speaking of his superheros (I think the series is called Hero Factory), his latest fixation was a huge robotic looking thing, which of course was very expensive. Having just had his birthday and tons of presents, I told him that we need to wait a bit, and save up some money for this ..thing. 

He looked at me straight in the eyes, and said “Then I have to get a job!” Pause… I said, “Mmm-K, what job would you get? You know you are not allowed to work yet, but maybe you can help around the house with chores and we’ll consider payments for your work?” He nodded enthusiastically. 

The next day was Saturday, so after swimming and guitar practice, I asked him, where he wants to go – museum, park, zoo? He turned around and interrupted my list “I have to go home, I have to do laundry!” 

I was trying to keep a straight face, and agreed with him. But at home, we realized there was no more dirty clothes to wash, as we have just finished the laundry the day before. He was genuinely upset that we had no dirty clothes to fill a washing machine with.. It was definitely a pre-tantrum situation, but since I wasn’t feeding it with attention, it began fizzling out…And then he heard the leaf blower! My Dad had started preparing to do some yard work.. 

The relentless go-getter that Sam is, without a moment’s hesitation he declared “I am going to help Grandpa then!” and off he went. He blew leaves all around the yard, he gathered them in paper bags, he pushed the wheel barrel, he also pushed the lawn mower by himself. Every once in a while, he’d stop and wipe his forehead with his sleeve, give out a big sigh, but then continue with his work. 

In the end, he sat on the patio with Grandpa, and just waited. I asked him to come in and clean up, but he said “No, I’ll wait for my pay first..” 

Then  I admit, I eavesdropped.. I went inside, but was still able to hear their conversation.. It was endearingly hilarious, mostly because Sam was incredibly serious and a very hard negotiator.. 

Dad: “So Sam, how much do you think is your worth today? Let’s see you worked with me for about an hour, that would make…”

Sam: “$40!”

Dad: “Whoa! That’s a bit steep. I don’t know if I can pay you that much for yard work.. You know people who do that job usually get paid about $10 – $15 an hour.. would that be good?”

Sam: “No, that’s not enough. I think more like $30 would be better.”

Dad: “But that’s still double what people normally get paid..”

Sam: “Ok fine, then how about I work some more to make it to $30…”

Of course my Dad is a pushover when it comes to Sam, so yes he paid him. But Sam did what he promised. He blew the leaves in the back yard, and helped take out all the trash..

The week after he did it again.. 

We got the toy, he built the darn 600 piece monster in less than 2 hours, and now his attention has shifted to bigger, better and more expensive lego monsters… But I am so happy he doesn’t shy away from challenges, he doesn’t stop and give up, with all of his difficulties, he fights, he moves forward, and he achieves. Now, housework, and helping with chores is not such a chore anymore.. It’s a mean to an end, it’s a cause and effect and it makes him feel included, needed, and capable.