Sunday, March 14, 2010

Translating Autism Studies into Practical Help for Kids with Autism

We have a great link on our "Favorites" that we look at about once a month (www.autismspeaks.org/science/science_news/index.php) It highlights the most important peer-reviewed studies on autism as their results emerge. As a parent of a child with autism, I read them with the eye of a teacher with great hope. A lot of the studies hit home to me and help me understand so much of why Tommy does what he does how he does it! How can I translate it into something meaningful for him NOW?? Here are my thoughts of those studies. And as they come out, I will add them to this blog.

A July 2009 study done by John Hopkins and published in the journal Nature Neuroscience showed that children with autism rely more on proprioceptive abilities than on visual input from their environment to coordinate motor movement and learning. The study also showed that the greater the reliance on proprioception, the greater the impairment in social skills, motor skills, and imitation skills. This study suggests that the theories on brain connectivity in autistic people are accurate in their claims that the short-distance connections are stronger than the long-distance connections (since proprioceptive connections are short and visual-motor connections are long-distance connections).

Layman's Terms: Wow! This is why I can't get Tommy to look at his socks and feet as he tries to put them on. He just won't! He does it by feel. This is why I have to tell him "Use your eyes" when he's trying a new climbing wall or motor action. This is why we nearly cried when we were trying to teach Tommy to ride a bike and he just wouldn't look at the path in front of him!

Advice: activities that make the child HAVE to look such as hiking on a really bumpy trail, riding a bike on a winding trail, climbing, walking on rickety paths, and for fine motor...drawing, writing (which many have a terrible time with), using utensils...

Study of face recognition deficits in children with autism - 1999, Journal of Autism and Developmental Disorders. This study found that children with autism do not distinguish faces well. Interestingly, this deficit was not related to cognitive deficits.

Layman's terms: They don't look at faces often enough to develop strong face-recognition skills.

Advice: The best teacher of eye-contact I've seen is Vincent Carbone. He teaches kids with autism to WANT to look at faces. Another suggestion is being in your kid's face when he's tiny, getting his attention lots. And how about making sure he sees lots of pictures of family members and friends faces from an early age? Yep, get him looking!

Study of Joint Attention, Gestural Deficits, and Later Language Development in Children with Autism, Journal of Autism and Developmental Disorders, March 1990. This study compared children with autism with children with mental retardation but no autism. It showed the deficits in gestures and joint attention (looking back at you and pointing to show is an example), sharing attention with you (they prefer to be solitary in their attention). A fascinating finding in this study was that later language development was shown to be more correlated with gestural non-verbal joint attention and less correlated with the variables of IQ and initial language levels.

Layman's terms: Wow, the language deficits could be more related to this lack of desire to share experiences (share their attention with you) than with their cognitive deficits... They are wired to not really be social! This one is quite tough. And yet it's not. Relationship-based, affect-filled communication that begins with following their lead.

Advice: Do everything you can from very early ages to get them to share their attention with you and make it fun! Give them lots of praise for looking at and experiencing emotions WITH you! Have lots of fun together and comment excitedly that you are seeing these things TOGETHER. And follow his lead and his interests and comment excitedly about all the things (no matter how odd) he is doing! Get in his face, man. Share life.

Study showing that children with autism were not interested in the social aspects of animated characters whereas typical kids looked more at faces. This study (2009 NIH) showed that the children with autism were more interested in audio-visual sychronization. (sounds that were matched by motions). It might also explain why children with autism tend to look at mouths instead of the eyes of the person speaking to them.

Layman's terms: They like the sound to match the motion

Advice: music, rhythm could be used in teaching anything...what about a cartoon character whose eyes made sounds?? Or whose nose did? How to get the attention to the face?

July 2009 - Journal of Child Development. This study said that in the past decade scientists had located a group of regions in the brain that is used specifically for social cognition. These areas may be developed by age 6, but between the ages of 6 and 11, they become much more specialized. The study showed that children with autism had deficits in thinking about and understanding the emotions, thoughts, and wants of others.

Layman's terms: They are not wired to understand the emotions and wants of others.

Advice: Teach emotions, actions, wants, and hopes of others from early ages and never stop including it in your child's curriculum, especially before the age of 6. When someone is sad, point it out! Explain why! Teach your child to recognize emotions. Use real people and pictures of real people. Give your child a pet to take care of and teach your child to notice when that pet is happy, sad, hungry, thirsty...wow, so much of this research seems to warrant relationship-based approaches!

In the first truly randomized, controlled study of an early intervention for autism, the Journal of Pediatrics reported in November 2009 that indeed, it does make a huge difference, the intensive early intervention group made huge gains over the children in group situations in public placements. It is critical to point out that the intensive group received a play-based, relationship based intervention (not table drilling) and that the control group received public special education with much less one-on-one.

Advice: Get that one-on-one for at least 25 hours per week and make it fun! Get the speech, ABA, and OT you can from the schools, get extra private, and put on your mommy, daddy, aunt, and friends boots and provide the rest! Everything under age 8 that encourages communication, eye-contact, affect, and skill-building is worth its weight in gold. JUST DO IT!

A British study done at the University of Cambridge in December 2009 revealed that on top of not understanding the emotions and wants of others (which has long been known), that the autistic brain also struggled to process information "about the self". In the control groups, neuro-typical people's brains became more active in the ventro-medial pre-frontal cortex when asked about themselves than when asked about "The Queen"....the autistic subjects (no pun intended) had the same level of activity. Michael Loub, who lead the study said that this proved that people with autism are not egocentric, as once was thought. they have trouble making sense of themselves and relationships between themselves and others.

Layman's Terms: Wow! Sigh. Help!

Advice: Help them know themselves by commenting often on things and people that they like and dislike. Help them understand their relationships with others through comments and photos about friends, relatives, hobbies. Help them see the interests they may share with others. and build relationships as strong as you can. Help them have friends and spend time learning about themselves and others. Help them understand themselves while also looking outward at otheres.

According to the chief science officer of Autism Speaks, Geraldine Dawson, 22 well-designed studies between the years of 1982 and 2007 have proven the benefits of vigorous exercise in decreasing repetitive behaviors, hyperactivity, self-injurious behaviors, and aggressive behaviors in children with autism and in improving attention, general motor function, general levels of happiness & self-esteem and social outcomes. Vigorous exercise was defined as cardio-vascular exercise for a minimum of 20-minutes straight per day.

Advice: She recommended including a rigorous exercise program in the student's IEP. For parents, obviously all the fun physical activity you can get into their day, the better. And the hard part is getting school personnel to follow through, but possible peer buddies can help your child get the exercise he or needs during his school day. It is so important for ALL kids, but doubly so for ones with autism who have difficult behaviors to overcome and severe attention problems. SOS!











Wednesday, March 10, 2010
















Roses are red, violets are blue

The perfect day is one with you.
Let's travel the land and have such fun!

I feel so lucky to be the one,

to have your company, joyous and true,
Mommy & Daddy & Maggie & You!




Thursday, March 4, 2010


To My Friend Apache
Oh How I Love to be Up High
Riding you while I look at the sky.
Your motion gives me peace and joy
You know me as a little boy.
With you there is no stress or fear
You carry me with love and cheer.
You see me in a different way....
And bring such warmth to any day.
Hurray, an unconditional friend I've found!!
To ride and feed and walk around....
Love ,
Tommy

Wednesday, March 3, 2010

Let the record state that BAD ABA therapy for a child with autism IS WORSE than no ABA therapy.

When I tell people we're in the public school system, we sometimes get these "Looks"...like how could you choose public school for a kid with autism who needs so much?

Well, I guess it's time to share about our experience in a PRIVATE school for autism. Let's see, where do I start? Do I start with the fact that the school he entered did not even do their own evaluation of his abilities? (No ABBLS, no formal test, nothing-what arrogance!, what cheapness! What sloth!) Do I tell you that they charged $75 an hour, claiming a 1-2 adult-child ratio that never happened? Do I tell you that they used an old-fashioned style of Lovaas ABA that made my kid 1. temporarily lose his personality 2. lose the spontaneous language he had (data chart to show this, want a copy?) 3. Have severe diahrrea for 40 days out of 9 months because they told us the lunches (of the 7 kids in the class) were refrigerated daily in the morning when they were not? (Monday nurse reports at 1:00 to show you...is that enough time to catch it from a classmate?)

Or how about walking up behind a therapist who did not know you were there and who said sternly your your child 3 times "Look at me"....then you see your child whimper, and this assistant jerk looks at another therapist and says, "Well, at least I got some eye contact out of him...."

When I look at their "data sheets", I want to cry...he learned nothing....during the time he was there, he learned to answer the questions, "What is your name?" and "How old are you?"...guess who taught him these? ME, the mom! They promised they would potty-train him, and didn't even start to try. His pretend play skills basically disappeared, and he developed scab marks around his knees from biting himself to escape the TOTALLY INAPPROPRIATE GOALS OF numbers, letters, and colors that they chose for a 3 YEAR OLD. Hello, how about teaching him to WANT to communicate...oh NOW you tell me that you don't like DIR-Floortime...then why is it in your add? Wow, you don't have any kids? Hmmm, neither do any of your therapists...

The director favored certain parents...they were the ones with money...the corporate lawyers, the business owners...the rest of us, and our kids....she basically ignored. And she did not want to learn anything new like (HELLO, YOUR METHOD OF ABA SUCKS AND IS ARCHAIC, or HEY, WE DON'T THINK IT'S OK THAT YOUR THERAPISTS SLAM KIDS DOWN IN THEIR CHAIRS TO TEACH THEM TO SIT...AND YOU WONDER HOW THEY END UP UPSTAIRS IN SECLUSION?) The rest of us were left to hope we got a nice therapist, but as we all know, shit rolls downhill, so if the boss is a jerk, she will likely hire in kind, etc.

So those of you out there who think private schools for autism are a better bet for your kid, think again, do more research, find out what type of ABA they espouse, find out if they are open to DIR-Floortime, talk to the director and find out if that person is a jerk. The county schools might not quite have it together, but at least in my county, they are finding people with hearts and minds to move forward using the type of ABA that not only teaches skills, but teaches children with autism that communication is FUN....so where we live, we'll take the county over the private crap any day.

OR you might end up hooking up your pop-up camper, taking your funny, communication-challenged child into your vehicle, and doing the best thing you could possibly do for him: give him all-day communication and experiences that are not repetitive. Give him explanations for the emotions he and you are feeling...pause and wait for the eye contact that will change his life if he can make it a habit...teach him as many words as you can.

and get the heck away from the buttheads!!!!