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Repost from the NY Daily News


By Carol Kuruvilla / NEW YORK DAILY NEWS
Read more: http://www.nydailynews.com/news/national/autistic-boy-genius-iq-higher-einstein-article-1.1340923#ixzz2SzHMHvmy


Kristine Barnett noticed that her little boy Jacob - whom doctors had tagged as autistic - seemed to have a fascination with patterns. So she took him out of his school's special ed program and let him study the things he's passionate about. Now Jacob is on his way to winning a Nobel Prize.


As a child, doctors told Jacob Barnett’s parents that their autistic son would probably never know how to tie his shoes.

But experts say the 14-year-old Indiana prodigy has an IQ higher than Einstein’s and is on the road to winning a Nobel Prize. He’s given TedX talks and is working toward a master’s degree in quantum physics.

The key, according to mom Kristine Barnett, was letting Jacob be himself — by helping him study the world with wide-eyed wonder instead of focusing on a list of things he couldn’t do.

Diagnosed with moderate to severe autism at the age of 2, Jacob spent years in the clutches of a special education system that didn’t understand what he needed. His teachers at school would try to dissuade Kristine from hoping to teach Jacob any more than the most basic skills.

Jacob was struggling with that sort of instruction — withdrawing deeper into himself and refusing to speak with anyone.

But Kristine noticed that when he was not in therapy, Jacob was doing “spectacular things” on his own.

“He would create maps all over our floor using Q-tips. They would be maps of places we’ve visited and he would memorize every street,” Kristine told the BBC.

One day, his mom took him stargazing. A few months later, they visited a planetarium where a professor was giving a lecture. Whenever the teacher asked questions, Jacob’s little hand shot up and he began to answer questions — easily understanding complicated theories about physics and the movement of planets.

Jacob was just 3-1/2 years old.

His mom realized that Jacob might need something that the standard special education curriculum just wasn’t giving him.

So Kristine decided to take on the job herself.

“For a parent, it’s terrifying to fly against the advice of the professionals,” Kristine writes in her memoir, “The Spark: A Mother’s Story of Nurturing Genius.” “But I knew in my heart that if Jake stayed in special ed, he would slip away.”

The Hamilton County mom, a nursery school teacher, decided to take Jacob out of school and prepare him for mainstream kindergarten herself.

Jacob thrived under his mom’s personal attention. She let him explore the things he wanted to explore. He studied patterns and shadows and stars. At the same time, she made sure that he and enjoy “normal” childhood pleasures — softball, picnics — along with other kids his age.

“I operate under a concept called ‘muchness,’” Kristine said. “Which is surrounding children with the things they love — be it music, or art, whatever they’re drawn to and love.”

By the time he was 11 years old, Jacob was ready for college. He’s now studying condensed matter physics at the Indiana University-Purdue University in Indianapolis.

His IQ rounds out to 170 — higher than that of Albert Einstein. He’s been working on his own theory of relativity. Professors at Princeton’s Institute for Advance Study were impressed.

“The theory that he's working on involves several of the toughest problems in astrophysics and theoretical physics,” astrophysics Professor Scott Tremaine wrote to the family in an email.

"Anyone who solves these will be in line for a Nobel Prize."

Warner Bros. has snatched up movie rights to Jacob’s story. Kristine and her son have embarked on a European book tour, but hope to have some time to rest by July.

“My goal for the summer is just to give him a few weeks off,” Kristine told the Indianapolis Monthly. “The last time he had that was when he came up with the alternative theory to the Big Bang. So who knows what he’ll create?”

http://www.nydailynews.com/news/national/autistic-boy-genius-iq-higher-einstein-article-1.1340923


 
 
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Here's a reprint from the Huffington Post. Great article.

http://www.huffingtonpost.com/2012/09/27/autism-employment-white-collar-jobs_n_1916611.html


A few weeks ago, Matthew Koenig, 24, was doing data entry for below minimum wage at a supervised employment center for people with disabilities in St. Paul, Minn.

Koenig, who has autism, was happy to have a job in a tough economy, but soon realized the workplace wasn't well suited to him. His co-workers "had too broad of a range of [disabilities]," he said. "Some people had really serious problems."

Moreover, employees were graded using "a time study to measure efficiency," he said, "but the nature of my disability means I lack certain kinds of motor skills, so I can't type as quickly as other people."

A sleep disorder caused Koenig to be late a few times, and since then, "they haven't asked me to come in for a few weeks." He acknowledged that "part of it was my fault," but the combination of a menial job and an abrupt dismissal "made me feel like I'm not worth anything."

Koenig, who scored a 1450 out of 1600 on his SATs, knows this isn't true. "Despite my autism, I have good instincts about people, and I try to do the right thing," he said in a self-assured staccato. "I'm perfectly willing to stick around, and ultimately my goal in my career is to make sure the job gets done."

The simple, repetitive tasks of his last job didn't match his intelligence, needs or aspirations. Instead, he said he wants to use the unusual outlook afforded by autism to build a meaningful career in the tech sector.

"I'd like to help come up with ideas for entertainment and video games," he said, "because one of my strengths is that I have an unconventional train of thought that other people don't have."

Mindful and ambitious, Koenig is one of a growing number of young people with high-functioning autism who are increasingly focused on building meaningful careers. A cadre of groups have begun developing new ways to prepare these young people for white-collar jobs.

AN 'AUTISM TSUNAMI'

They face a daunting set of obstacles. Job prospects for adults with autism in the U.S. are crushingly bleak. Nationwide, their combined unemployment and underemployment rate is around 90 percent.

The employment situation owes much to the basic nature of autism spectrum disorders (ASDs). Typically diagnosed in early childhood, autism is a developmental disability that can impair communication skills, speech, fine motor skills and behavior. In very mild cases, symptoms may be limited to impaired social skills and difficulty registering empathy. In severe cases, individuals face enormous challenges with verbal communication, show little interest in other people, exhibit extreme sensitivity to light and sound, and develop obsessive behaviors.

Some researchers estimate that up to 1 percent of U.S. adults have ASDs -- about 3 million people -- but the range in severity and the historical stigmas surrounding autism have made it hard for scientists to collect population data. The unemployment estimates take the entire population into account, including those with severe symptoms.

There is currently no established cause of autism (though theories abound), nor is there a cure.

Another pressing mystery for researchers is why diagnoses of autism among children in the U.S. jumped 70 percent between 2002 and 2008 -- from one in every 150 kids to one in every 88. Autism Speaks, a large national nonprofit, has estimated that during the next 10 years, more than 500,000 young people with ASDs will turn 18.

But if current trends continue, many of them won't receive the basic education required to join the competitive workforce.

According to a 2011 study, only 56 percent of young adults with autism in the U.S. graduated from high school, and only 14 percent started college. How many graduated from college is unknown, but experts say it's likely to be fewer than half of those who started.

The high dropout rates among students with ASDs are due in part to the structure of school itself. People with autism often have difficulty meeting deadlines, managing their time and asking for help when they're confused -- all basic academic skills.

"Schools still struggle to understand autism and how it's different from other disabilities," said Peter Bell, executive vice president of programs at Autism Speaks. "One of the fallacies we have to overcome is that IQ is a meter of disabilities. In 2003, we learned that 60 to 70 percent of people with autism have average or above average intelligence, up from what was thought for decades to have been only 30 to 40 percent."

Despite the evidence, Bell said, some educators are still unequipped to address the needs of kids with developmental disabilities and above-average IQs.

"We clearly have a crisis looming," said Brenda Weitzberg, the founder of Aspiritech, a Chicago nonprofit that employs young adults with autism. She warns that unless there are adequate jobs available, even the most effective skills training will be of little use.

"I have no doubt that more of these kids are going to be better prepared" for high school and college, Weitzberg said. "But after they finish school, then what's going to happen to them?"

"Some people refer to it as the 'autism tsunami,'" said Bell. Unless more employment opportunities are created for people with autism in the coming years, hundreds of thousands of young adults with autism will join the ranks of the unemployed or underemployed.

THE NEXT BEST HOPE

The news isn't all bad. Two decades of well-funded research and treatment have produced young adults with autism who are better prepared to join the workforce now than ever before.

"The skill sets of these kids are so much higher than we ever gave them credit for and what people in the norm tend to give them credit for," said Gary Moore, founder of a recently opened autism career-training school, the nonPareil Institute, in Plano, Texas.

Bell at Autism Speaks noted much the same thing. "There's no question that there's a segment of the [autism] population that has tremendous skills and that can be quite successful in sectors that we never considered before," he told The Huffington Post.

For workplace disability researcher Laurie Gutmann Kahn at the University of Oregon, it's all part of a broader trend toward viewing "people with ASD as having a different way of navigating the world, which can be extremely useful in a variety of professions," she said.

Marc Lazar, program director at Aspiritech, takes it a step further. "There's a growing recognition that high-functioning ASD individuals have qualities that neurotypicals don't," he said. (The autism community coined the term "neurotypical" to describe someone who is not on the autism spectrum.) "They can find details that most people miss, they're able to focus for long periods of time, and they really savor specific kinds of work like software testing, lab work and proofreading."

All of which leads to one conclusion, in Bell's view: "The autism population represents a pool of potential employees that corporate America needs to explore."

This is where autism career-training programs come in. By focusing on those young people with autism who appear best suited to function in a competitive workplace, organizations like Aspiritech and the nonPareil Institute are offering a small group of high-functioning adults the opportunity to decide for themselves whether to integrate into the neurotypical world.

In Chicago, Aspiritech aims to prepare people for competitive workplace demands while they hone their skills on software testing. Since it was founded in 2008, Aspiritech has employed more than two dozen adults with high-functioning autism, most of whom still work out of its main offices. Weitzberg, the founder, said she is proud of the fact that they have 18 corporate clients, including a number of large U.S. companies with which Aspiritech has competitive contracts.

In Plano, a different model is being developed with the same goal: to prepare each of the school's students, who have high-functioning autism, for an individualized, personally fulfilling white-collar career. Founded in 2009, the nonPareil Institute operates as part university campus, part vocational center. Students learn the finer points of video game and computer app design, while also building up their social skills and life strategies.

Both programs are also designed to create cultures of self-determination and healthy personal ambition.

"I didn't have a professional life before I came to nonPareil," said Renee McMurtry, a 21-year-old student from Fort Worth, Texas, who was diagnosed with Asperger's syndrome. Today, she has "opportunities that didn't exist before. ... I see myself doing a lot in the next few years, making money and being successful."

SILENT BARRIERS

As the autism community rallies together to prepare young people for the workforce and for white-collar careers, many of the nation's biggest employers have yet to return the favor. A number of them are still wrestling with basic questions about hiring individuals on the autism spectrum.

As Matthew Koenig, the young man in Minnesota, put it, "the conveyor belt of traditional employment puts you at a huge disadvantage with high-functioning autism, because you talk the way you do, and that's an automatic strike one."

Under the Americans with Disabilities Act, it is illegal to discriminate against qualified job applicants because they have autism, but experts say widespread discrimination continues. "They still do it. They'll just find another reason not to hire the person [with autism]," said an autism advocate, one of a half-dozen activists and autism experts who spoke to HuffPost about the slow pace of integrating people with autism into the white-collar workforce. None were willing to speak about employment barriers on the record, however, citing the sensitive nature of the subject. Employers were equally reluctant to be identified as having hired people with ASDs for white-collar jobs, noting issues of employee privacy and potential legal liability.

The conversations revealed three distinct concerns about hiring people with ASDs that persist for some employers, serving as silent barriers despite the law.

First, employers worry that they don't know enough about autism in adults to wade into the community, lest they make a mistake. Two people also said some employers don't know how to discuss job expectations, performance issues and potential limitations comfortably and respectfully with employees who have autism.

Second, some white-collar employers expressed hesitation about the administrative steps in providing "reasonable accommodation" for someone with autism, a requirement under the Americans with Disabilities Act.

One such accommodation in particular was cited more than once as a source of frustration: autism-related "job coaches." People with autism often need more help adjusting to new jobs and responsibilities than neurotypical workers do, and the coaches help them navigate new workplaces and learn their tasks.

Coaches are typically paid for by state employment agencies, not the employers themselves. But in interviews with HuffPost, autism advocates relayed complaints they had received that job coaches were "disruptive and didn't fit in with the rest of the staff" and "didn't know their way around the office." In one situation, an employer said, "the coach just came in and did the guy's job for him, while he sat there."

Kahn, the University of Oregon researcher, defended the provision of additional support for people with autism early in a new job, even if it is sometimes inconvenient. "A person with autism might not understand that you're supposed to talk to people at the water cooler. In those situations, they need someone who can explain it to them," said Kahn, "and maybe coach them and say, 'People are going to ask you about your weekend when you're at the water cooler. If you want to, you can tell them, "I'm really busy and need to get back to work."' That's what they need to hear."

The third silent barrier to hiring people with autism is by far the thorniest. Employers said privately that company lawyers suggested that hiring someone with autism could put them at a greater risk for legal liabilities, as well as higher health care costs.

Last year, a San Diego-area Comfort Suites hotel paid $132,500 to settle an Equal Employment Opportunity Commission lawsuit filed on behalf of a front-desk clerk with autism, who said he had been illegally denied a job coach when he requested one. Cases like this one have apparently bolstered the myth that hiring people with autism is especially complicated or that people with autism are somehow less reliable and more risky than neurotypical employees.

"ASDs still carry the 'Rain Man' stigma for a lot of the general public," said an autism advocate who requested anonymity to speak frankly. "[Employers] are just covering their asses."

To this day, many Americans have never met a person with autism, and millions rely on stereotypes and movies for the bulk of their opinions about people with ASDs.

Yet a huge wave of high-functioning young people with autism, like Matthew Koenig, are beginning to explore the possibility of meaningful work. Members of this new generation have learned to view their diagnoses less as disabilities per se and more as different sets of abilities. As they push the limits of their potential, one at a time, they simultaneously push the ball forward for the entire autism community.

"The reality of having autism is that in order to find our strengths, you've got to get to know us," Koenig said. "It's like an onion. You have to peel back the layers."


 
 
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Its been two weeks that Curtis has spent full time in his classroom and as of last Friday, he has also started a part time after care program that the school offers - without any more support than the 25 other kids get; two adults and twenty five kids. It is safe to say that Curtis is in a much different place this year. 

He has matured in a way that takes my breath away at moments during the school day. He has stepped up to the plate, he has been challenged and he has grown from it.  At least two teachers pull me aside every day noting this change.  Last Friday dropping him off at after care is a perfect example that shows this change in character.

I can image that the conversations at home went pretty similar to the conversations that we had at school about it the week prior; he was nervous, he didn't know what to do without support, he wondered why he had to go and so on. Curtis has a small group of trusted adults that make up his support team (larger then he would like to admit though, as I am sure many MANY family and friends would do just about anything for him). But from his perspective, his support team is small but ALWAYS present - going from family support to school support, to home support and back to family support. So, when he asked me what he would do without a 1:1 support person I responded quietly in his ear, as if I was sharing a bad secret, "You will have a blast - that is what you will do without a 1:1 support person". His face lit up and he actually had a little kick in his step at the thought of that.

On Friday after school I dropped him off at the rec tables, which happen to be across the gym from the table that I have for my after school duty -  dismissing kids for their buses. Curtis was re-introduced to the two adults in charge and they motioned for him to have a seat while the other kids slowly filtered in. I got out his drawing pad, a snack and gave him a high five and took my spot across the room waiting for the buses to arrive. He kept a close eye on me, but also tried to muster up the energy to be fine sitting solo until some familiar faces showed up. Once the classes were dismissed and students started coming into the gym either for rec or to wait for the buses he lit right up, sat up extra high and tried to push his fears down. A few of his classmates noticed him sitting over on the rec side of the gym and approached me for an explanation. I told them that today was his first day giving the after school program a try. I then mentioned that they should head over to him and ask him what he was doing, curious to hear how he would respond. One by one his classmates went over to see him and give him a high five. I heard, from across the gym, a scared but strong voice shout back to them when they asked what he was doing, "I am at rec! I am at rec!" I stood there doing my bus duty with the biggest smile on my face. He is doing everything that his "support team" (and the hundred others) have ever hoped for.

Caron, 1:1 School Support

 
 
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This morning Curtis saw this picture and said "There's no numbers on my brain is there? I don't have a number 8 in my body, do I?"

Is there a medication that will counter-act this comical, genuine, and bizarre reaction to this picture from an 8 year old? Not that I'm aware of. His brain is wired how it's wired. Medication geared at these children is generally to treat behavior, like bolting, but can also help kids on the spectrum to develop socially and focus on direction. I have seen Curtis make strides while on medication and feel there is nothing wrong with following whichever program enables your child to succeed.

A study released last month in the Journal of the American Academy of Child & Adolescent Psychiatry has been making the rounds on various blogs with findings that suggest medication and parental training is the way to go in treating autism-related behavioral problems. Interestingly, the study divides the children into two groups. One has medication and parental training while the other group, just meds. No room for non-medicated children with autism in this study. Of course, there are various reasons and agendas for supporting the use of medication but I thought this would be a good opportunity to shares some observations on Curtis as we've tackled the medication dilemma.

Curtis was on stimulant medication for most of kindergarten and first grade. At the end of first grade we took him off the medication to see how he would respond. After a  successful summer, we decided to start 2nd grade without the medication and it has worked out so far. When Curtis was a couple years younger he was a human tornado. What I noticed when Curtis was on medication was that he was under control but more subdued in general.  He had less of an appetite, but was more focused and willing to go to school and learn. There were pros and cons. These days he's off medication and doing fine but it's been a success and necessary for him in the past.

Greg, Dad

I think its important to note the difference in attitude of the parents and caregivers who give the child meds.  There is a common mindset that the meds will keep the children "under control" rather than using the meds to help the child find success.  We began using meds with the mindset that curtis could learn a certain set of skills if he could just get a little help calming his body down, and that's exactly what happened.  Meds helped him hold up his end of the deal (learning) and we held up our end (teaching) and now he has internalized all of the things he learned while on meds, so he doesn't need them at this time.  If we ever need to use meds again, it will be because he is struggling to learn a set of skills that will help him be successful in his lifetime, not because we are trying to "control" him.  He is as much a part of this team as we are.

Laura, Mom

I agree 100% with Laura - there are different attitudes about the use of medication among children from a cultural, generational and moral stand point. And more often than not the child gets lost in the mix. However, I have noticed since working with you two that where Curtis is, what he is going through and what his support looks like has remained the central component in your decision and as a result of listening to him (verbal and non verbal) - he has grown both on and off the meds.

From a school perspective, his peers are more receptive to him and he is more receptive to his peers off of meds. From day one I have been using Relational Therapy in my time with Curtis - this means that Curtis learns and grows most from the impact his relationships have on him - the relationship being the most important learning tool he has right now. Being off of the meds has created a learning platform that is raw, unfiltered and true to who he is and what he needs in this moment of his life. This "rawness" has created moments of sadness, frustration, joy and happiness - all of which are learning opportunities we tackle every day.

Caron, 1:1 School Support

When Curtis was on meds I think we were able to help him slow down enough to see some things he was passing by without a thought.  For example, we were able to show him that there are cars in the street that will hit him if he runs into the street. There are kids that can be fun companions if you slow down enough to interact with them.  While it was positive to be able to show Curtis these things, he lost of lot of his flare while on meds.  Curt was pretty quiet, anxious and sometimes hyper-focused on his trains or roads.  I'm glad to see that since he has come off meds his full personality has returned and he has retained what he learned during that time period.

Jamie, 1:1 Home Support


 
 
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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.




 
 
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Curt's new 2nd Grade Picture
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