It's a lot to ask of a child with autism to spend four nights away from the predictability of home. But Curtis has become used to making four trips or so a year to Danbury, Connecticut, to visit family.  He's accustomed to these trips, a 4.5 hour car ride typically, which have occurred since birth. Curtis handles the travel and high volume of family quite well at this point through lots of practice, trial and error.
Familiar movies help with the car rides. As do stops at state welcome centers so Curtis can grab some free maps.
We used to like to play 'high point/low point' to get the good and bad out of Curtis' day as he saw it. Now, he's too cool for that game and refuses to answer the question. But here were the high points and low points to his Thanksgiving family week as I saw them.

High Point

On Thanksgiving, Curt's uncle started a fire outside in the evening and had marshmallows to roast. Curtis is very fond of this activity, never missing a marshmallow roasting opportunity. He also very much likes the idea of getting family and friends around a fire.
There were 4 or 5 of us who hung around the fire for most of the night while others would come in and out of the house. Curtis was having a blast but would notice when attendance around the fire dropped. He would stand up from his bucket seat and say "I'm going to get more of the family." Five minutes later he would appear in the driveway with at least 3 people in tow each time, then assigning them available seats by the fire. Curtis does not often come back from recruiting trips empty handed. As his uncle said, "How do you say no to Curtis?" I struggle with that one myself. Curtis kept them kept the party going with some sweet dance moves, providing further incentive not to disappear back into the house.

Low Point

We went to a nice playground on Friday with the weather unseasonably agreeable. Curt was against the trip to the playground, though he couldn't explain why, and we thought /hoped he'd change his mind as we got there. Especially once he saw his younger cousin running around having fun. Instead, he refused to leave the car when we parked and things only got worse from there. Curtis was in the backseat with his mom and was crying, hitting, and completely frustrated that he didn't want to leave the car and couldn't exactly figure out why. He was just determined to be defiant but it was very upsetting to him at the same time.
After a while, I played with his cousin on the playground in hopes that would lure him out. Instead, he would peek up from the backseat of the car but refuse to get out. He told his mom he didn't want to be sad because it was Friday, his favorite day, but it can be hard to get Curt back on track when the wheels have come off. What's more, if he didn't get out and play at some point before we left, he would spend the rest of the night regretting not getting out of the car and talk about it incessantly, like resulting in additional meltdowns.
In a last ditch effort, after about 40-45 minutes, we were able to get him out of the car by making it appeal to him as an adventure. There was a hole in the fence he could crawl though to enter the playground and this proved the draw to break his stand-off. He snapped out of it once his feet hit the playground and he began to run around with his cousin. While these situations are difficult to go through, it's always a positive when he works his way through it. By the time we left, he had put the rough start and this temporary low point behind him.

Greg, Dad

For about the past 3 years, Curtis has been taking swimming lessons through the Center for Therapeutic Recreation, sponsored by Easter Seals, which develops programs for children with autism and other disabilities.  When he first started swimming, it took Laura and I all we could do just to get him in his “swimming shorts” (god forbid you call it a bathing suit because those are for girls) and into the pool.  Curtis would fight us all the way from the living room until the moment his swim coach inevitably peeled him off whichever one of us he clung to for dear life.
To this day, Curtis still tries to get out of swimming lessons just about every week, though it is much less of a battle than previous years.
We still have to use the locker that is one number higher than the previous week, a routine he has stuck to since he began swimming. It nearly went terribly wrong this week, as someone was already using locker 48, but after assuring Curtis that this was not a big deal, he chose to use locker 47 for a second time. Although we may seem a little cruel for having him go week after week I assure you as soon as he actually hit the water he is all smiles. 
When he first started swimming lesson, Curtis couldn’t swim much at all.  He had to wear a float around his waist and use a pool noodle. He was terrified to swim on his back because he was afraid he would hit his head at the end of the pool, which he had done once before and it's difficult to convince him it won't happen again.  I think all of us have said before on this website that we have all spent a fair amount of time worrying about Curtis’ physical safety which obviously extends to water. A year ago, Laura was happy that they would have at least 30 seconds to save him should he get into the water alone because at that point he could tread water for about that length of time before going underwater.  It has always been a goal in the back of my mind for him to be able to swim across the pool without assistance.  Last week, I sat on the side watching him swerve and circle his way almost across the pool before finally grabbing the sideline. 
I asked, “Curtis what in the world are you doing?” knowing he would have made it across had he just gone in a straight line.  “Drawing roads!” was his response. 
Of course Curtis had found a new way to do his favorite activity.
I told him after swimming that if he went in a straight line he would have made it across the pool.  He seemed a little surprised by this information.  This week, Curtis got into the pool, threw a noodle to his swim instructor and took off.  He made across the pool.  And back. And back across again.  All of the swim instructors cheered and Curtis could not have been happier asking if I taped it each lap that he did.  I am so happy to report that Curtis now stands a good chance in the open water for at least 50 yards.  Hallelujah!  Another goal set for Curtis and another goal exceeded.

Jamie, 1:1 Home Support

There is a phrase that myself, Laura, Jamie, and Caron have heard repeatedly from Curtis since Halloween night.

"Does this food have poison?"

You never know exactly what will set a child with autism off or what will permeate in that interesting and immense brain. For Curtis, delaying the gratification of indulging in his Halloween candy while his parents quickly looked it over for tampering ending up being a little more than he could immediately move on from. Since then, he has been asking us if everything he is about to eat is poison. Everything. If he starts eating, but then touches a chair and returns to his food he asks, "Is it poison now"? This has been happening all day, everyday, and it doesn't matter how many times we explain that checking for poison is just something parents do on Halloween night to make themselves feel better about accepting candy from strangers. That it isn't really anything to worry about. But Curtis isn't buying it. His guard is up. He asks if the little burnt looking edges of potato chips are poison, any little speck on food that shouldn't be there? poison. Not sure how long this will last but it seems to have some legs.

This isn't our first foray into irrational autistic fears. At times, Curtis has been so afraid of bugs, literally anything that flew near his head, that it often made it difficult for him to play outdoors. He would sprint back inside and asked to be sprayed with bug spray numerous times if he were playing outside. We shopped for the safest spray possible and in the summer, he would invariably walk around smelling like "Off". He would flail at the bugs and ask me to destroy them all, to which I would always tell him I only kill bugs inside because outside we are in their home. He didn't like that explanation much. If he were on medication, this seemed to exacerbate the problem, which has been relatively controlled in the last year.

Curtis also had an almost paralyzing fear of elevators until he was about 6 years old. He hated the feeling of being inside an elevator and couldn't process what was going on at all. He hated that slight jump when it started and the weird settling when it stopped. If we HAD to take an elevator, he would burrow himself into one of his parents and tremble with fear until the experience was over. Indeed, there were many times we got extra exercise in the stairwell over an elevator ride in order to make Curt more comfortable.

In order to combat this particular fear, we practiced riding in non-crowded elevators in places he felt safe. I would bring him to work on a Saturday where there was an elevator in our two floor office. I would ride the elevator with him and eventually built up to him riding the elevator himself. At The Children's Museum, where he felt very safe, his mom and I would let him spend entire visits figuring out the elevator in hopes of eventually alleviating the fear. He also practiced at the mall in Danbury, Connecticut, which houses a glass elevator, allowing Curtis to visually experience exactly what happens in an elevator ride.

Eventually, he got over this fear of elevators. He also feels a little better about sharing open spaces with bugs, though he isn't crazy about it. I'm imagining this poison thing will be short-lived, but who knows. Logical explanations don't always take with an autistic child. It's more about going through a process.

Greg, Dad

__Paranormal

I sit down at Alex’s tri-annual IEP meeting expecting it will last about 15 minutes. I almost didn’t come at all, thinking I’d just send the letter from his doctor saying Alex didn’t need a nurse in the classroom.

That’s odd: When did we request that? And if we did request it, how come he hasn’t had a nurse in his classroom for all the years he’s been in New York’s public schools?  

This question doesn’t really get answered as I squeeze into the miniscule seats with Alex’s teacher and OT, his PT and speech therapist, and a nice guy from the DOE who seems to run the show. We talk about Alex, who is 13 and diagnosed with PDD-NOS.  

First, we go over familiar territory on Alex’s IEP. His progression on language, his ability to do simple addition. He delivers the newspapers to classrooms every morning with a staffer, a vocational training will they hope Alex will continue using fewer and fewer prompts in the months ahead. “But sometimes he doesn’t understand that he has to deliver the paper and leave the classroom,” his teacher reports. “He wants to say hi to everyone and examine everything in the class…” He’s also bolted from his occupational therapist and tried to make for the school playground.   

“We’ve been discussing,” says his unit teacher, “that Alex could benefit from a one-to-one para. I think with hormones and puberty and everything going on, it’s becoming a little too much for him to focus.”  

My kid will truly, really, never – as the shriveling budgets and the fiscal years pass one by one – ever live independently. (As they said back in the NICU when he was born, I just don’t want you to think you’ve ever going to have a normal baby.)  

I bring my own suitcase of Alex stuff, too. Can they help him understand that he shouldn’t leave our apartment and bust in on neighbors? Stop biting his arm when frustrated, stop unraveling and ripping his own T shirts? Can they help him understand the dangers of traffic? Can anyone?

  “I can’t have him run across the street when I have five kids back here on this corner,” his teacher says. She adds that sometimes Alex will also listen only to her, and not to the class paras and other staffers. Familiarity breeds authority with Alex.  

Disruptive? Disturbing? “I wouldn’t say ‘disruptive’ and I wouldn’t say ‘disturbing,’ either,” the unit teacher replies. She’s discussed the para idea with others, and believes Alex would benefit in focusing and transitions “just for one or two years. We don’t ever want him to become dependent on one person.”  

Including dad, I’m afraid I realize. They called to remind me of this appointment a couple of times. How come they never mentioned the para discussions?  

We move to Alex’s other potential vocational work, based on his interests: janitorial, laundry. He loves Laundromats. “He mopped the kitchen floor the other day,” I say, feeling kind of like a defendant. “Of course, we do have a Swiffer, and I think he just likes to press the button on the handle.”  

“We use erasable markers, and have him wipe up the marks,” his teacher says.  

“We don’t need to create extra spills in our house,” I say.  

“Well see, we have a class that goes out to do laundry every Thursday,” the unit teacher adds. “It isn’t Alex’s class, but if he had a one-to-one para, he could go with them.”  

They want it, they say he needs it, and for now all they have to do is write it on the IEP and the City of New York, for some reason I still don’t understand amid my growing cynicism, must come to up with the para. In another timeline, Alex might get booted from public school now. How much longer will that apparent right of mine continue? “You could write that Alex needs a ride on the space shuttle and the city has to produce it,” I said. “Put down that he needs a BMW, will you?” No sense abandoning humor yet.

Jeff Stimpson is a native of Bangor, Maine, and lives in New York with his wife Jill and two sons. He is the author of Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism (both available on Amazon). He maintains a blog about his family at jeffslife.tripod.com/alextheboy, and is a frequent contributor to various sites and publications on special-needs parenting, such as Autism-Asperger’s Digest, Autism Spectrum News, Fatherville.com, and The Autism Society news blog. He is on LinkedIn under “Jeff Stimpson” and Twitter under “Jeffslife.”

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

Before Curtis started kindergarten, we as his parents did not entertain the idea of medication to treat his combined Autism/ADHD disorder. He would run relentlessly and of course had some behavior issues but we did not feel the need to medicate him not did we necessarily believe that meds were right for these conditions. But when Curtis started kindergarten at age 5, he was still an avid bolter, and we knew he'd have no qualms about bolting from the school any chance he got. When he first started school, he would arrive, run to the far end of the field and attempt to climb fences to get into the woods He did this everyday and and I genuinely feared for his safety, especially since we didn't really know anyone at the school yet. Did these people at the school really know what the were up against? Could they be on him every second?
We also knew that Curtis was intelligent but he had little ability to focus in a conventional classroom setting. As his parents, his safety comes first, but we also wanted to give him every opportunity to succeed in school. After consulting his physician, we put him on a stimulant that helped him focus, though we found it came with the side effects of a subdued personality and appetite.
Curtis refused to take a medication and would not swallow a pill. His first medication came only in pill form. One day, when he had his mom in tears as he thrashed and refused to take his medicine, I called his doctor and said we needed to try something we could mix in a water or yogurt. He simply would not take the medication. We attempted to mix it into food but he could peg the flavor or texture change and would stop eating. Getting Curt to take any sort of medication has never been easy.
The main benefit in my mind to the medication was that he was bolting less and I felt there was less of a chance of him running off, disappearing, or getting hit by a car. Believe me when I tell you this kid was fast. We tried a number of different approaches but found on the meds, he was focusing and doing his work. But he wasn't exactly Curtis anymore either. And he was coming home with a full lunch box.
He spent much of his 1st grade year on Vyvanse, an ADHD medication that I neither endorse or disparage, that helped him focus without sacrificing much of his appetite. Still, as a parent, you're never really sure if medication is the way to go to control these symptoms. We struggled with this as his parents on many nights. Check-ins with his doctor showed him in the low percentiles for height and weight which became increasingly concerning. We blamed the medications directly for stimulating his growth not only as a result of what the meds might do themselves but also that they reduced his appetite. We decided to take him off medications after his first grade year.
He followed his 1st grade year with a great summer and no medication. We decided he would start his 2nd grade year without meds. Curtis has been off medication since last June and we are extremely happy with how well he is doing. His mom packs him a great lunch everyday and his lunchbox comes back empty. He eats all the time and is brimming with personality. He is gaining weight and getting taller. He has confidence when he walks the halls at his school and he is silly again, which he generally wasn't when medicated. Meds aren't the answer for Curtis right now but I don't regret his having been on them his first two years in school. It seemed at the time as if that was necessary. Autism and ADHD combined is no picnic, and I would never suggest how a parent medicate or not medicate there child, this is just our experience so far, and I'm just glad Curtis is doing as well as he is without the benefit of a pharmaceutical.

Greg, Dad

People with autism are rarely employable, so I've read, and end up doing jobs that require simple, repetitive direction. But that doesn't quite gel with what I've seen in my own son, who is routinely grouped with the brightest in his class for advanced mathematics. Indeed, something doesn't add up, and this article by Science Daily explains that it's time to stop emphasizing the shortcomings of autism and make use of the superior attributes that people with autism have to offer.

"It's amazing to me that for decades scientists have estimated the magnitude of mental retardation based on the administration of inappropriate tests, and on the misinterpretation of autistic strengths," Mottron added.

Temple Grandin is the most well known case of translating autistic abilities into mainstream success. She turned her feelings of being threatened by her surroundings into a revolutionary method for the ethical treatment of animals in slaughter plants. It's more humane to the animals but also increased the functionality of slaughterhouses. She also developed the "squeeze machine" to calm a hyper-sensitive person. In each case, her autistic mind served as a benefit and not a detriment to her work. It seems to me that if we utilized the brain of those with autism, over trying to figure out a way to make them more like us, we might all be better off for it.

The article goes on to say: "Dawson and other autistic individuals have convinced me that, in many instances, people with autism need more than anything opportunities, frequently support, but rarely treatment," Mottron said. "As a result, my lab and others believe autism should be described and investigated as an accepted variant within human species, not as a defect to be suppressed."

Temple Grandin has also said she would not support a cure to wipe out the autism spectrum. Curt's mom and I have discussed the same thing. Raising a child with autism isn't easy, but as interesting, intelligent, and unique as these kids can be, "curing" them would seem almost a shame. Seems to me they would be better off solving world economic problems and debt crisis, or in medicine. These people are smart, they cut through the BS, and they see things normally developed people do not. It seems like they have a whole lot more to offer than menial employment and our sympathies.

"Recent data and my own personal experience suggest it's time to start thinking of autism as an advantage in some spheres, not a cross to bear," Mottron said.

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