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!

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!

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

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!!!!

Educating a child with autism presents the challenge of a lifetime.
After learning that your kid has the diagnosis, you are then informed that he will need a minimum of 25 hours per week of one-on-one, at least initially, with someone experienced in the field, for several years. You are then presented with a choice of therapies, some diametrically opposed, but the basics being speech therapy, applied behavior analysis, occupational therapy (for motor challenges), and play-communication therapy. So you have to research and decide what type of teaching, where, who, how...how much?

The main problem you run into is always the "one-on-one" part.
No matter that you have your neurodevelopmental pediatrician's letter recommending one-on-one, no matter that the majority of the research recommends it for early intervention for autism. Neither public nor private schools are willing to provide that kind of intensity, and I'll bet you know why.

From them, you will hear the EXACT same spiel, from each and every county official and their minions (some of whom are teachers and therapists who defend their choice not to provide your child with the one-on-one he so desperately needs knowing their bosses will defend them in order not to have to be bothered with actually supervising them). Thank God this is not the case for us this year...we had a teacher last year who was not afraid to write on Tommy's IEP, "Able to provide knowledge in one-on-one situations...HINT HINT!!" She knew it had become an inappropriate placement, but if a teacher says so out loud, they get their head chopped off, you know.

Anyway, here is the SPIEL:
" Life is not one-on-one...they have to learn how to respond in a group setting...ABA will not lead to generalization....they need to be exposed to the language of peers...natural environment in a class is the best option."
ACTUAL MEANING:
"We don't want to spend the $$ it will take to bring knowledge and language to your child...we can help you, but not THAT much...my God, what do you expect, lady?" Especially if you principal is Sara White at Ison Springs Elementary.  You will have to call her superiors, present documentation that shows how much your kid needs daily exercise in order not to harm himself, and extra grace as she attempts to bully you out of getting the exercise your kid needs, the qualifications his teachers need (WHAT, a teacher with a specialization who isn't going to affect MY job?  i.e. if your kid can't take the CRCT, he does NOT exist for a selfish as hell principal)

To these officials and their minions I offer this:My son did not choose to be born with the ATTENTION SPAN OF A GNAT AND NO MOTIVATION TO BE LIKE OTHERS....Look with your EYES into a special education class and you will UNDERSTAND IMMEDIATELY (oh sorry, is this too many CAPS?) why he needs this. The cute little girl with Down's is hanging on the teacher's every word and mimicking her...the boy with cerebral palsy is learning his numbers...the retarded boy is laughing with his classmates..now look over at the boy with autism. He is in the corner, rocking slightly, staring at his favorite spot on the wall. He is NOT listening to the teacher, he NOT imitating the other kids...he's just there. It's like he's UNDERGROUND.  But until your boss makes my kids progress just as important as the CRCT test, I guess he's screwed.We did not ask for this disability. Cannot help the fact that we are in a total bubble, especially the early years...We cannot HELP that you have to be 8 INCHES FROM OUR FACE FOR US TO RESPOND....but WE NEED SO MUCH HELP....
We need you to make us respond, because if you give us a choice, we might choose not to. And without intervention, that choice might become permanent.  I simply don't give a damn about your promotion.  In fact, your selfishness and self-promotion is making the world a harder and more difficult place for TRULY special needs kids.  I hope your "raises and promotions" based on the CRCT scores of kids that DON'T HAVE SPECIAL NEEDS make you proud of yourself and your higher salary.  It has certainly not raised our opinion of you.  In fact, why, Ms. White are you not on Wall Street where you belong?

Little by little, with the right help, we will wake up and join you! We will answer you (you have to push!)...we will share our attention with you. Don't let us drift away, go underground. Make us come out into the light and communicate with you. Get the most skilled people you can to help us...because we can do it! After this initial one-on-one, then maybe your dreams for us, to learn in a group, to imitate our peers, to respond to your questions, to really really see you.
Those dreams will come true. Believe, work hard, and don't give up on us....please.

POSITIVE BEHAVIOR INTERVENTIONS/PRAYING FOR GRACE ALL OVER THE PLACE

Fortunately, there is a new category for those dealing with kids with autism, and it's a category that we all can learn from. It's called Positive Behavior Interventions.

What it means is that when you have kids with behavior problems, you use positive strategies and language to decrease unwanted behavior and increase desirable behavior...here are some of the basics; taught to me by patient special education teachers (Betsy), awesome psychologists (Janet), you know, those types....

1. Never use the negative in your instructions...always use the positive (Betsy)
Don't scream...."NO don't run!!"....scream, "Walk" and then "Yay! Great Walking!"

2. Take the undesirable behavior (such as spitting on windows, running away in parking lots, making tiny crumbs out of food substances, peeing in public places, falling to the floor to tap the shiny surface of the tiles, spitting water 4 feet high in the baby pool (ick), grabbing the food of others...uh-oh, is this getting too personal?) and find an ACCEPTABLE OUTLET THAT SATISFIES THIS NEED.....like...let's see...ok, you CAN spit in the bathtub......and you CAN make crumbs out of the green onions...so that we can cook with it...and you CAN tap on this Bongo drum, rather than so many other surfaces...and you CAN use this spray bottle to "wash" the windows and piano rather than spit on them...and give loads of praise for these alternatives.

3. You may need to take some sort of anti-anxiety drug or "patience" drug to help you be more effective in these Positive Behavior Interventions.

4. It might be a good idea if your relatives or friends give you some "down time" so that you can MAINTAIN your positive behavior intervention approach.

5. You will need to have some sisters who can just laugh their asses off at all of it.

Here are some situations to consider:

1. You have gone to a restaurant and gone to the bathroom, leaving the behavior of your child to a relative (No Mary, this is not about you...not everything is about YOU!)....you come back and on the table is a PILE OF CRUMBS THE SIZE OF THE EGYPTIAN PYRAMIDS.....In order to do a POSITIVE BEHAVIOR INTERVENTION at this time, you need to be able to say: 1. All done with crumbs....clean up crumbs 2. physically prompt your child to clean up the crumbs and then say 3. good job cleaning up crumbs....chips are for EATING!! (remember, no NOS, no DON'TS, and no NOTS....)

2. You are at the pool and your child is getting in the babypool and spitting the water in 5-foot-high streams...you....A)remove your child from the pool? B) Scream bloody murder? C) Pray for grace??? Uh-oh, I'm sensing some frustration here. Breathe?

3. Let's see now...you go to a Mall, and your child falls on the floor to tap the floor, testing the sound and quality of its "tappiness"...do you A) Scream bloody murder and run out of the mall? B) Praise your child for the quality of his tapping on the mall floor? or C) Tell him that the mall floor is dirty, to please stand up, and wash his hands....Where? Do You Have Sanitizer? Well, aren't you just the perfect parent....well, then use it, for Christ's Sake!! OK, chill dude.

4. Ok, there's a great show at the Circus and you are parking in the lower part of the deck....you get out of the car and your child completely freaks out....bites the heck out of his hands and wrists and shows EXTREME ANXIETY AND SELF-INJURIOUS BEHAVIOR in this situation...you really, really, want to go to this show. What will you do? A)Put him in a stroller with an anemone which you know will calm him down-even though he's 6 and folks will stare B) Drag him kicking and screaming through the parking deck C) Run off and pretend you don't know him. D) Bite your own wrists and put yourself in the stroller and demand that he push you?

My sisters laugh at all my efforts at POSITIVE BEHAVIOR INTERVENTION....I walk into the kitchen and there's honey everywhere, I scream, "HONEY is for EATING! CLEAN UP HONEY!" We briefly wet paper towels and "clean honey" and he happily goes on his way...I go into the laundry room...it's flooded and there is soap everywhere, I think "NOOOOOOOOOOOO!!" but I yell, "The washine machine is for washing clothes!!! Clean UP!"
Sometimes I fail at Positive Behavior Intervention....Tommy peed outside of the principal's office again the other day and I ran shrieking "NOOOOOOOO DON'T PEE PEE OUTSIDE AT SCHOOL, ONLY AT HOME!!!" He cried and was so hurt...He can't understand why it is ok to pee outside at home and not at school? (sigh) ....

I go into the living room and wonder how one person could have created so many "crumbs" out of so little. I wanna scream, "DAMMIT, WHAT'S UP WITH THE CRUMBS??????" but instead I yell...."BAGELS ARE FOR...." and he fills in the blank...."EATING"....and wanders off.....

I catch him spitting on the piano and I want to scream: "FOR GOD'S SAKE, DON"T SPIT on the PIANO!!!" but instead I say, "Dry mouth..." and he repeats, "Dry mouth" and frolicks away.

And the truth is, these little interventions do work...slowly but surely, they do. Because these kids are going to doing odd repetitive little behaviors for a long time, and they are going to get yelled at...so bless them, and let it be positive, so their souls can thrive.

But it's good to have 3 sisters laughing at it all...and keeping me laughing some too.

I Met the REAL Rainman and asked him how to help my son

Meeting "the Rain man" in Person with my usual cry, "Help, help, what to do?"

Could it be we've come full circle?
3 years ago we would not have dreamed of watching the movie "Rain Man".

Not when you've just had a son diagnosed with autism
and one of you has just only seen a brother with it who was left behind...after thirty years?
very much like Raymond Babitt (the character in the Rainman).

But yesterday I found it at Goodwill (along with a perfect Abacus and a pair of Steve Maddens)
and thought...you know, I really want to see this 22-year-old movie. For the first time!

And you know what? It was OUTSTANDING. Dustin Hoffman absolutely NAILED the essence of autism in so many ways. No, my kid is not a card counter or calendar genius...yet :)
But the lack of reciprocity in conversation, the visual obessions with things like power lines, angles, flashing lights, abstract shapes....the interior life that seemed to dwarf all exterior attempts to bring it in and harness it...and yet the impossible knowledge that this person can hear you very well, but just isn't wired to care to respond...and the work it takes to bring that reponse as a regular thing.

Tomy Cruise's frustration with all the little repetitive behaviors of Raymond. His swearing when Raymond would suddenly run away! (been there...) His frustration with Raymond's refusal to answer questions. His initial impatience but final acceptance of Raymond's compulsions...

His annoyance with Raymonds need to spin things constantly (Thank You...)

His love....the love he developed for Raymond and the understanding of him...ok, 3 tears...right there at the end....that's all.

But for the most part, and very much to our surprise, 3 years later, WE CAN LAUGH AT THIS STUFF!!

I saw the real Rainman (Kim Peek) speak at an elementary school near the house last year, with his Dad, his sweet old dad who has supported him (and tolerated him and you might need to watch the movie again to understand what that entails....or you could also spend some time with Tommy :)....The audience got to ask him any history math question about 7 different topics. Dates, sports records, etc. He got all of them right....all of them. His memory was unparallelled in human history as far as I've read...

But after the lecture....when I spoke to him in person, I asked him, "How can I help my son learn to communicate better? Do you have any preferences on what interventions are out there these days?" and he mumbled a completely unrelated, incoherent answer that was totally absurd in view of my question. I thanked him and walked on out, a little teary.

After watching the movie, for the first time last night, I realized Kim Peek was much like a radio...one-way--and stuck in that mode with most people. Though his father was able to get much out of him because of their many repetitious routines...

But as for the movie, Rainman, I will definitely add my own real-life Oscars: a 5th...and a 6th Oscar to the original four it received in 1988. My real life Oscars, go to Kim Peek, the real Rainman, a man who could read 2 pages at one time using both eyes, the extraordinary man who passed away last week, and another (plus the Nobel) goes to his dad, for sticking with him all those years, in a way that Charlie Babitt (in the movie) was not able to do for Raymond. It really is a testimony to the love strength, and perseverance that a father can have for a very special son. I will never forget their appearance together at Woodland Elementary School.

Rest in Peace, Kim Peek. and God Bless Your Dad.