As is common in those with autism, Curtis lacks that part of the brain which immediately judges and assesses people he comes in contact with. Not that all people without autism judge others, but I think most of us will gauge people we come in contact with. That looks like a sweet old lady, that guy looks menacing, that kid looks fit to be tied, those sorts of things. Curtis does none of this, which I think is great and potentially scary.

A couple of weeks ago, Curtis had a large mural type of artwork going behind his school, other than the lack of permanency associated with murals as this was his standard chalk and concrete. He had returned several times to work on the elaborate drawings of roads and houses and asked me in the afternoon to go back. When we turned the corner to go around to the back of the school, there were several unsavory type characters hanging around.

Now I'll just say the police are generally on top of this area. I've seen them drive through quite a few times and even park there for awhile making sure no one behind the school is up to no good. But the police can't be everywhere.

In total, there were about seven "kids" behind the school hanging out near Curt's drawing and some played basketball. The leader looked to be about 18, with a button down shirt and a bottle wrapped in a brown paper bag. He kind of smirked at me and slurred a "good afternoon, sir" in my direction. His buddy, a top henchman looking type, just looked at me like he hoped I would tell them they didn't belong there so he'd have a reason to get heated. Then there were about 5 kids raging from 11-15 ish dropping f-bombs every 3rd word and generally just berated each other. Curtis did not care about any of this.

With his box of chalk under his arm he marched straight through the group to where he left off with his drawing. It put me in sort of an odd position. I didn't want to give these guys the satisfaction of leaving just because they are there, but I also don't want Curtis hanging around while these kids hurl obscenities at each other. But as Curtis knelt down to his drawing and explained to me what the picture was, his recent progress, and how the picture would look when it was finished, I decided there was no leaving until he got the work in that he planned.

We shared the space with the group for about an hour before they left. The kids played basketball and swore a lot but Curtis hardly paid attention. I waited for him to call them out on their swearing as he does when anyone else swears but he was wrapped up in his work. The only other interaction came when one of the kids wanted to draw a 3-point line on the court. He came over and asked me if he could use a piece of Curt's chalk to draw the line. I said it was okay and Curtis shot me a look. He then stopped what he was doing and stared at this kid the entire time until he brought the remaining portion of the chalk b back to the box. At that time, work could continue.

I think a lot of kids would have stopped in there tracks when we got behind the school but Curtis didn't care. I guess I was proud of him for it, but at the same time wondered what could potentially happen to him later in life if he lacks the ability to evaluate people and their intentions. For now, he's always got someone by his side. And I remind myself that he is still just an 8 year old boy. And I admire the lack of judgement in his brain. But still, as he continues to learn and grow, I do hope there is a part of his brain that understands not everyone is as sweet as he is.

Greg, Dad

"Is it okay if my knee touched my sandwich and then I ate it?
Is it okay if I touch my book then I touch my face?
Is it okay if I dropped a crumb on my shirt? An ant won't crawl up my shirt will he?
Is it okay if I touch the couch then touch my popcorn then I eat it?
Is it okay if my knuckle touched your food?
Is it okay if I got some salt on the computer?
Is it okay if I wipe this eye booger on you?
Is it okay if I dropped a pretzel on the couch?  Can I eat it?
Is it okay if I get pee on my hand and pull up my pants before I wash my hands?  I won't get it in my mouth, will I?
Is it okay if I ate and then I touched a wall?
Is it okay if this Cheez-It fell on the blanket and then I ate it?
Can I wipe my hands on my pants? I won't get grease on them will I?
This isn't poison is it? (10x a day minimum on this one)
Is it okay if I don't say thank you or hello? What will happen?"

These and similar questions....all day...every day these days and for quite a while now. Funny? Yes? Sometimes annoying when they've been coming at us rapid fire? You bet.

Mom & Dad

As stated on previous occasions, we love Easter Seals. Much of the success Curtis has had in school stems from strides made during his developing years at Easter Seals. Then Laura began working there and we still value our relationships with Easter Seals staff. As Autism Awareness month approaches, I am re-posting an e-mail I received from Easter Seals today. Pass on the questionnaire to anyone you may know who could use an effective developmental screening tool to assess a child's progress:


Developmental Milestones Screening The first five years are critical in a child's life. And this is the most important time to get your child support for a developmental delay or special need.

Children develop skills, or "milestones," at their own pace. How is your child doing? You only need 10-20 minutes to check with the Ages & Stages Questionnaires®, Third Edition. Your ASQ-3™ results will help you see if your child's developmental progress is on time and alert you to concerns that you can talk over with your health care provider.

Please note: ASQ-3™ is designed for screening, not diagnosis. It is a quick check for children from birth through age five. If your child is age six or older, please discuss his or her development with your child's health care provider, your local school district, or your child's teacher. Results from the questionnaire will be emailed to you within two weeks.

Below in the link to the questionnaire

http://www.easterseals.com/site/PageServer?pagename=ntlc10_mffc_homepageasq&autologin=true

_"This is my back scratcher! Ms Barber got it for me because she has been scratching my back for three years and wanted a break!"

That pretty much sums it up. I have been planning on getting him a back scratcher for awhile now. Every time he is sitting at circle or sitting at his desk he requests that I scratch his back - a sensory feeling he seeks when he needs to be soothed during stressful time. And who doesn't love their back scratched? I could get away with being his personal back scratcher in kindergarten and even in first grade - but now that he is in 2nd grade I thought it was (finally) time to implement an independent and a self-soothing skill that he can take control over during the day.

He has taken to this in a way I knew he would. I painted it red for him, and he was quick to put 7 smiley face stickers on it first thing this morning, representing the 7 people in his life who help him out - his idea. The back scratcher has accompanied him to morning meeting, it has provided a break during a math test, it has walked with him down the hall (scratching the whole way), it sat next to him during lunch and it has provided quite a bit of conversation among his class and friends. The way he describes the feeling of it ('OMG - this feels SO good!") and the way he describes the reason he has it are priceless to hear.

Caron, 1:1 School Support

There has been a lot of press coverage on the redefinition of autism since the story broke last Thursday. Experts are attempting to reduce the number of children diagnosed, not through therapies, but by changing the criteria of what qualifies as autism. The bottom line would mean no services for high functioning classic autism, Asperger's and those diagnosed PDD-NOS. The reality is that preventing these kids from getting early intervention services is short cited and will only end up costing a lot more in the long run.

The Autism Society, using the Government Accounting Office Report on Autism 2007, estimates that "Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention". Personally, I have no doubt that the services Curtis has received since his diagnosis are preparing him to survive, work, and live in the real world, and that lifelong costs associated with his care, which some estimates have at over $3 million, will be greatly reduced by the therapies and help in school that he has received in his formative years.

I've read several articles on the topic in that last few days and identify with this mom completely. Her son exhibits more classic autism visual signs than Curtis, but there are lots of similarities with our kids. They need help in school, but there is intellect and talent to unlock that could be turned into productive, wage earning ability. She says of her son:

"He scored 98% and 100% on his two most recent French tests, exactly the same tests the typically developing students in his 7th grade class took. Sam can tell you the day of the week your birthday falls on, going forward or backward about 50 years, and also remembers most of what he did on any particular date for the past several years."

The article points out a cost of about $30,000 a year for a full-time aide to get her son through his day. I believe it is this cost and any associated cost driving this redefinition as a quick fix on school. Sounds like a lot of money and it is. However, it pales in comparison to providing full-time care to adults with autism in group home settings, with estimates between $75,000-$200,000 a year. Save today, pay a lot more tomorrow because without early-intervention services, these people with autism are going to have no where to go when their parents pass on.  I have no doubt Curtis would need full-time care for the rest of his life if he hadn't been receiving the services he's been getting since he was three years old just as I have no doubt there is now hope for him to work and live independently after the. We would love nothing more than to ween him off these services, as soon as he's ready, but Curtis and kids like him require these services in order to figure out the rules the rest of us are playing by and figure out a pretty confusing world, then adapt.

With appropriate supports, autistic individuals like Sam are able to learn and to grow into productive, taxpaying members of our society. If a far narrower definition of autism is adopted — allowing insurance companies and financially-strapped school systems to deny beneficial services – society will pay far more in the long-run, more families will be financially devastated by this condition, and people with a significant disability will be relegated to a lower quality of life.

Standardized testing for children with autism has typically been difficult. The structure of the tests often does more to emphasize the limitations of those with autism rather than display their strengths. This article from Live Science shows how typical intelligence tests, specifically the Wechsler Intelligence Scale for Children (WISC), are a poor fit for autistic people and give them little chance to successfully pass the test. It's a timed test that relies on a lot of cultural and social knowledge. Not exactly the forte of the autistic mind.

Instead, tests like the Raven's Progressive Matrices or the Test of Nonverbal Intelligence (TONI), avoid obstacles brought about by behavior and language difficulties. Children are asked to solve problems by designs and patterns which are often strengths of children with autism. According to the study, autistic kids score about 30% better on these tests than on the more commonly used "WISC".

"Many of those who are considered low-functioning—if you give them other intelligence tests, you will find hidden potential," she says. "They can solve really complex problems if you give them material that they can optimally process."

"The hidden potential of autistic people seems to fall in common areas—tasks that involve pattern recognition, logical reasoning and picking out irregularities in data or arguments...Recognizing these talents, rather than pushing them aside to focus on the drawbacks of autism, could benefit not just autistic people, but everyone else as well.'

The article also offers up a couple of great conclusions

1.) "It doesn't mean that it's easy for them in everyday life, or that it's easy for their parents or teachers," Soulieres says. "But it shows that they have this reasoning potential, and maybe we have to start teaching them differently and stop making the assumption that they won't learn."

2.) Mottron concludes that perhaps autism is not really a disease at all—that it is perhaps just a different way of looking at the world that should be celebrated rather than viewed as pathology.

Studies such as this sure seem to be on the right track. There are obvious advantages to the autistic mind that don't fit in our conventional ways of evaluating intelligence. These kids don't learn the same way, they don't tests the same way, but there is a whole lot more to their minds than conventional test scores or school evaluations would indicate it. Personally, I like this post in the comments

"Has anyone stopped to think that maybe autism is a form evolution? Perhaps a more reasonable logical human species? Think about it. No war. No race pre-occupation. No religion. They could be just what our race needs......."

Greg, Dad

Statistics vary on the exact cost and economics of autism. This 2010 article from the New York Times cites a study from the Harvard School of Public Health which estimates costs at "$72,000 a year for someone with an extreme case of the disorder, and even $67,000 a year for those on the lower end of the spectrum"....“It can cost $3.2 million to take care of an autistic person over the course of his or her lifetime,” the study said. That article goes on to mention that insurance companies often won't cover autism treatments.
The New York Post had an article about a week ago about shifting the costs of autism from taxpayers to private insurers.

Another article from AOL Daily Finance states, "The lifetime health care costs for a person with autism have been estimated to be more than $1.6 million, and the estimated total expense burden to the health care system associated with ASD [Autism Spectrum Disorders] rose 142% from 2000 to 2004," according to a 2009 study published in the journal Pediatrics. Some estimates say it costs about $18,000 more to educate an autistic child than a typically developing child. It surprisingly difficult to come up with some concrete numbers on the cost of autism as it varies from family to family and state to state.
The fact is that if we did every therapy currently out there to treat autism, we would go broke. There are also peripheral costs associated with autism that rarely show up when compiling totals. Some families take out second mortgages to pay for chelation therapy and b12 injections. We are fortunate enough to live in a state with good services. Other states have 2 or 3 year wait lists for early intervention programs so people pay out of pocket for speech, occupational therapy and developmental therapy. Maine also requires private insurance companies to cover early intervention related services so we have been fortunate in that regard. We've found the biggest financial strain is having to limit ourselves to jobs and careers that can support Curtis' schedule.

Curt's mom only recently stopped waitressing for a career in the school system. Being a waitress provided the flexibility to be home with Curtis whenever I had to work because we could not put Curtis in a traditional daycare. Curtis is either with his mom, dad, or a support person at virtually all times. I've turned down career advancement that involves travel because it's not conducive to our family situation. Another peripheral cost is house hunting.

Curtis always comes first and we've had a great situation at his school with an ed tech who teaches and fights for Curtis and it isn't a situation we want to mess with. Unfortunately, we also live in an expensive neighborhood. While we see nice houses for sale all the time in neighboring cities and neighborhoods, we realize a change could be quite detrimental to Curtis' education. He has just gotten comfortable at his school and trusts his ed tech completely. Buying the house we want in another neighborhood or town nearby means having to start from scratch with another school system and we know from doing our own research that support for special needs students can change drastically from school system to school system, not to mention turning Curt's world upside down in a new setting, away from what he has worked for the last 2 plus years building at his current school. The fact is, we'd rather rent in an area where he is getting the best special ed. services than own in an area with a bad reputation for handling these kids. We have done a lot of research in this area and seen at least a dozen houses over the last couple years, but we'll pull the trigger only when the house and school system are a match.

There is no cut and dry answer to how much autism costs. Autism is a spectrum disorder and associated costs, whether paid by the parent, insurance, or taxpayers, are on a spectrum as well. From our point of view, we do what we can afford while always keeping Curtis' best interests front and center, even if that means personal sacrifices in terms of housing, money and career.

Greg, Dad

This is post 2 of 2 on Curt's initial autism diagnosis shortly before he turned 3 years old. He's made continuous strides though early intervention services and people who Curtis meets today, shortly before his 8th birthday, often have no idea that he even has autism. He is also coming off his most successful Halloween ever, a day he used to dread, complete with lots of door to door trick or treating with one of the "coolest" kids in class.

Educational and Service History: Curtis has just started therapeutic development preschool in Portland. Occupational therapy, his parents believe, twice monthly and speech therapy twice weekly will start next week.

Office Observations: Curtis had a pacifier in his mouth, looked up at me when I entered the room, and then ran to a corner. He commented "in" when he put magnets into a magnet tube. He then climbed into the table and set there, playing with the magnets quietly for some time. Curtis did not respond to his name when it was called. He did not engage with the psychology intern. He interacted with the child development specialist after she introduced a pop up book that caught his eye. He made squeaking noises as he looked through and giggled, sitting close to the specialist but with limited eye contact. He did not want to transition toys and did not take any toys and hold them out to show his parents during the assessment.

Assessment and Recommendations: In summary, Curtis is a 2-year 8-month-old boy with developmental delays in a number of areas, including particularly communication and social skills. Concerns have been raised by previous evaluators through the Child Development Services that Curtis may fall in the autism spectrum. In addition to extensive discussion with Curtis's parents today, observation of Curtis, and review of his records, I reviewed criteria for autism from the Diagnostic and Statistic Manual of Psychiatry-Fourth Edition with Curtis's parents. In the area of impairment in social interaction, Curtis can show varied eye contact depending on the situation, but overall I feel it is decreased. It was certainly decreased in the office today even when a very engaging adult play partner was interacting with Curtis, and it was also decreased when previous evaluators entered his home. Curtis shows a lack of spontaneous seeking to share enjoyment, interest, or achievements with adults, including his parents. His parents feel that he does not show show much response to their emotional state and seems perplexed by his cousin's temper tantrums.

In the area of communication skills, Curtis certainly has an expressive and likely also a receptive delay. He engages in some stereotypical language use, such as repeating the last word of a question asked to him. We did not echolalia during today's assessment. Curtis does not show any interest in imitative play skills, though this may be a product of his developmental level. In the area of restricted, repetitive, and stereotype patterns of behaviors and interest, he does show preoccupations with certain subjects, such as letters, numbers, and puzzles. His ability to learn and manipulate these objects are relatively high compared to his general developmental level. He also is interested in parts of objects, such as the wheels of cars. He tends to organize and line up his toys. Curtis very occasionally engages in stereotypical motor mannerisms, like flapping his hands when angry. He has some ritualistic behavior, such as touching trees and rocks on the playground.

Overall, I feel Curtis does fall on the autism spectrum. He fulfills 8 diagnostic criteria for autistic disorder, including at least 2 in the area of social impairment. However, I prefer to learn more information about his functioning in the preschool setting before refining his diagnosis to a specific autism spectrum disorder (autism versus pervasive developmental disorder not otherwise specified). I look forward to further discussion with his Child Development Services therapists and providers about this question. I am pleased that he is beginning developmental services. Given today's diagnosis, Curtis' progress in his program should be closely monitored. Consideration should be given to an autism-focused therapeutic developmental preschool program, and an increase in his speech and language therapy, particularly with a focus on social pragmatic as well as expressive and receptive skills.

As Curtis is very interested in books, I suggest this as a possible avenue for his parents to work on increasing his tolerance of social interactions wit other people. He is currently quite resistant to having someone else read to him. We suggest making a book with photographs that he may be interested in and trying to gradually increase his interest in reading with a reading partner. I gave Curtis' parents printed information today from the Maine Health Learning Resource Center, including a variety of books on autism and information about support groups such as the Autism Society, which I encouraged them to join. Curtis' parents are interested in the DAN (Defeat Autism Now) protocol. I discussed the fact that we do not specifically carry out this protocol through our office, but that certain aspects of the protocol, such as a gluten-free/casein-free diet and certain vitamins are likely not harmful, though their benefit has not been firmly established. (We discussed research findings, including a Cochrane analysis on the subject of gluten-free/casein-free diets). I suggested consideration of Fragile X and chromosomal testing, but Curtis' parents prefer to defer at the present time.

Today's assessment included 2 hours of face-to-face time and 1.5 hours of record review and report generation. I look forward to seeing Curtis back in 6 months.

Since this initial diagnosis, Curtis, mom, and dad, have been back to see this same primary care specialist every 6 months.

Greg, Dad
Dr. H, MD, MPH, PhD
Developmental-Behavioral Pediatrics