How autism can cost families millions

As the rate of reported cases rises, the expense of providing care -- sometimes for a lifetime -- is becoming staggering.

By Jonathan Berr Mar 25, 2013 8:58AM
daughter, illness, child, parenting, insurance, health, medicalLost amid the recent coverage about the frightening rise in reported cases of autism is any discussion of the costs to families -- which can be staggering.

According to data from the Autism Society, the annual cost to society from the illness is $137 billion, greater than the state budget of California and more than twice the market capitalization of General Motors (GM), North America's largest automaker.

No less overwhelming is the cost to individuals and families caring for a person with autism. The Autism Society cites estimates of $3.2 million for the lifetime costs of such care. Behavioral therapies for children can cost $40,000 to $50,000 per year. Caring for an adult with autism in a supported residential setting can cost $50,000 to $100,000 per year.

"Even if no new instances of autism occurred starting today, the number of adults who would potentially turn to the human services delivery system for services and/or supports by 2030 will be 500% higher than it is today," according a statement the society provided to MSN Money.

The costs can be such a burden that parents have known to move to states where children on the autism spectrum get better benefits for care. Parents must often pay for services out of their own pockets because what schools provide is inadequate. Increased emphasis on early detection is no doubt costing taxpayers more money, but it's not clear exactly how much.

And, of course, the concern about the rising rate of reported cases is indeed justified. Data released last week by the Centers for Disease Control and Prevention indicate that that rate in American children is now 1 in 50. In 2007, the estimated rate was 1 in 86. Most of the increase is due to better, early detection of autism, which experts say is critical for successful treatment.

But Michael Rosanoff, associate director of public health research at Autism Speaks, says those figures, which are based on parental surveys, are probably too conservative. Data from South Korea collected by doctors estimate the rate at 1 in 38, or about 2.64% of that country's children.

"We think it's at least 2% (in the U.S.), but it may be higher," he said, adding that the federal government needs to do more. "It's absolutely frightening."

Jonathan Berr is the father of a 6-year-old son on the autism spectrum. Follow him on Twitter @jdberr.

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139Comments
Mar 25, 2013 10:48AM
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Hi, I do NOT  agree with this article, I have a son with Autism, when he was in kindergarden , his public school teacher was the the one who told us he had Autisms ,  this public  school taught him  to act correctly, introduce himself to some one new, speak clearly, and say the correct thing to people, I live in Davenport, Iowa, and the public school my kids went to was great, now he is 17 and a junior in High School, a public school, he is not in any special classes now , and also has had a part time job for 2 years, he just got his driving permit so I am teaching how to drive !
Mar 25, 2013 10:34AM
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A once rare disorder is now so common that everyone knows someone with an affected child and no official can tell us why it's happening.
Health authorities admit that there's no known cause or cure for autism. There's nothing a mainstream doctor can tell a new mother whose baby was born healthy and is developing normally to prevent that child from ending up on the autism spectrum by age two.
No one at the Centers for Disease Control and Prevention or at the American Academy of Pediatrics has ever even called autism a crisis. Researchers have wasted millions of dollars looking for the genetic cause of autism, despite the fact that there's never been a genetic epidemic in human history.
The only thing these experts are sure of is that their ever-expanding, untested vaccination schedule
isn't to blame and they have lots studies--all connected to the vaccine industry---to prove it. Maybe when the cost of autism buries us, we'll get serious about honestly addressing the cause.
Anne Dachel, Age of Autism
Mar 25, 2013 11:03AM
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My grandson was diagnosed with Autism many years ago. My daughter put herself through nursing school, worked a part time job, and raised him with very little assistance. She was accepted to Anesthesia school to become a Certified Registered Nurse Anesthetist so she could better provide for his needs. Unfortunately, due to the diffculty in finding/maintaining childcare for her son she was forced to withdraw from school and return to her RN job. She now has approximately $100k in student loan debt (which cannot be considered for bankruptcy), along with expenses for counseling, medication, and time off of work for the same. ... but, hey!... let's keep providing money for healthcare, education, etc. for those who are not even US citizens.  No loan forgiveness for her either. I truly admire her strength, devotion, and determination.  How does one maintain hope in the face of such a dilemna?! Anyone know of any special consideration for loan forgiveness in the face of financial hardship due to healthcare situations?

Mar 25, 2013 11:00AM
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The main question is:  Where did all this autism come from?  When I was young, it didn't seem to be so prevalent.   In fact, I don't recall knowing  or knowing of even one person with the problem...and I went to school in three different states so I was around a lot of young people.  What is the underlying cause of the syndrome?  I'm appalled that more hasn't been done to find the causative factor.  Is it more prevalent in the east than in the west?  The north than in the south.  It seems to be that New Jersey is a "hotbed" of autism.  Why?

 

Further, why is it some children seem to "grow out of it", particularly if they've had P.T. or O.T. during their formative years?

 

What is happening/being done to our children who are the future?

Mar 25, 2013 10:55AM
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It's all about the money. Autism is the new gold mine and the increase is due to better, early detection of autism is a bunch of bunk, as we now have the schools putting the autism tag on children who do not do well in school mainly because there are 25+ students in the class and they just don't have the time to give any attention to some children, who do not learn their or the mainstream way.

My son was going to a traditional school and could not keep up and was given the "high probability of autism tag" so I move him to another school and he's doing fine. The traditional school was teaching one grade level ahead of other schools in the area and they needed an excuse to keep their averages up.

All they were concerned about when I transferred my son was getting my signature on the "special needs" forms, so they could submit the expenses for this and get money refunded, so the special needs teacher could keep his job. I had meetings with the school and my son's teacher stated she just didn't have time to spend on him. I responded back that your work load is not my problem, as we are discussing my sons needs here and to talk to her supervisor about her workload.  

Widen the spectrum enough and everyone is autistic and thus taking away from the kids who really, really need the help.

Mar 25, 2013 12:02PM
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First of all, there are DEGREES of Autism. That's why it's called a "SPECTRUM". Many people with high-functioning Autism have careers - YES - CAREERS! Many with high-functioning Autism haven't even been diagnosed. So if these figures scare you, take into account that these numbers likely include high-functioning Autistic people.

However, there ARE many who will need support throughout their lives and can not work. The answer is, get those who are able to work into a career that matches their interest and you will have one of the best employees on board!!! They will work harder and become experts at whatever they are interested in. Just don't expect them to "act" like everyone else.
Mar 25, 2013 11:17AM
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As the mom of 2 young adult sons with Autism, this article angers me but only goes to prove a point.  The ABLE Act has died in sub-committee twice over the past 8 years - this bill would allow families to set aside money for the care of their loved ones with a disability in the same way you can save in a College Bound Fund.  My husband & I had to come to the heartwrenching decision to place our sons in a group home because of self-injurous behaviors and elopement risks but we still want to help in any way we can.  It is unfair that at this time, only a special needs trust (where you have to get an attorney involved) is available for parents to save for the time when they will no longer be here to see to their loved ones needs that are not met by SSI or the state governements.  People - write your Senators and Representatives. .get The ABLE Act passed into law.

 

Oh, and Tarzan - FYI  My family (which includes an older daughter) has been part of a medical research study into Genetics and Autism through Stamford Medical University since 1995.  Guess what???  They cannot find a definitive answer to the question.  Really?  Ummm, let me think.  Yeah - genetics has to be a part of the scenario or why the heck would I have hit a homerun twice!   

Mar 25, 2013 12:48PM
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As the father of a child with autism what really chaps me is the amount of money our government hands out to those who don't need it and can work, while those with geuine disabilities who do need support are left behind.
Mar 25, 2013 11:35AM
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I have two daughters who have autism. I have spent my entire retirement savings on treatments and care for those girls. When I die they will certainly become a ward of the state as they will have no their place to go unless a significant cure is discovered. The government needs to be proactive and find a way to fund research to discover why this happening to children at such an alarming rate. Furthermore, the legislation allowing parents to establish a tax exempt care fund for these children is a must. Our Congress has been sitting on this for a couple of years now.
Mar 25, 2013 10:31AM
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Sad story, but it's not cheap to treat any sickness. 
Mar 25, 2013 12:08PM
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elvis, when the parents run out of money or die, they become the government's/taxpayer's problem anyway.  It's cheaper to treat all diseases earlier than later.  If we treat the kids and get them to the point where they can live/function independently, we won't have to pay for them to live in group homes.
Mar 25, 2013 11:58AM
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America is on the twin horns of the Autism dilemma.  Parents of autistic children will approach any and all new  therapies in a desperate effort to give their child a normal life, one that includes being self-sufficient and able to take care of and provide for themselves.  Taxpayers, on the other hand, are wondering just how and why they are expected to foot the bill for all of the treatment, therapy and special education resources poured into autistic children.

 

There are no easy answers, especially when one asks the question "What if all the therapy and education in the world will do absolutely no good in the end?"  Do we ask parents of the profoundly autistic to just walk away and surrender their children to be wards of the state?  What parent wants to do that?  But at what point do the taxpayers have the right to demand that no further resources be wasted on what is essentially a lost cause?

 

A century ago, even fifty years ago, autistics were considered "insane" and simply locked up for their natural lives in asylums.  We know better now, and there are some who can be reached and go on to lead productive lives.  Those are worth our time and effort as a society, just as it is our corporate obligation to provide at least a base line of care and shelter to those who will never be able to join society.

 

Just playing Devil's Advocate here.  As I said, there are no easy answers.  In fact,there are no right or wrong answers.  There really are only questions.

Mar 25, 2013 11:58AM
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Early intervention is helpful, however autism is a neurological deficiency.  We try to expose these kids to social groups that can "help", but the truth of the matter is, these kids would rather play by themselves.  They are more comfortable on their own, than in a group with a bunch of screaming unpredictable kids.  Teachers need to know that classroom modifications are a MUST.  Lighting should be natural, there should be no perfume smells, and outside noises should be limited.  Kids with autism are stimulated by their environment.  They will act out behaviorally if their environment is causing them sensory overload.  Simple modifications don't have to cost a lot of money.  Schools bill medicaid if they can for OT and PT services, but are these services even necessary?  We are insisting that our kids with autism spectrum disorders are receiving these services, and yet they are being pulled out of their regulary scheduled classes for services that don't really help anyway.  They would do better with simple classroom modifications.

Mar 25, 2013 12:10PM
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Autism can certainly take a finanical toll on a family, we learned this first hand after our son was diagnosed in 2005 when 1 in 150 children were being diagnosed. Our son is still considered non verbal, he also has extreme sensory issues, acid relux, Sleep apnea, epilepsy and Vitamin D deficency. Treating his medical conditions are costly then add in the therapy services that are required daily which are not covered through our medical Insurance. We lost our home in 2009 after exhausting all our savings. The choice was simple walk away from our home and free up the much needed funding to provide these services. Laws can and have been passed requiring Insurance companies to recognize Autism as a medical condition; however doctors and medical groups simply find it easier not acceptting medical coverage which leaves the family of an autistic child no choice but to pay out of pocket for these services. I'm sure Autism was around many years ago and most individuals with this life long disability slipped through the cracks.    
Mar 25, 2013 12:26PM
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The attitude concerning mental health has to change in this country. Mental health is still a stigma to many, metal health providers are charging way too much, which they would be less inclined to do if they had more patients, and no insurance exists that anyone can afford.  Kids, especially, with autism can be helped by simple patience and perseverance.  Never give up.

Mar 25, 2013 11:39AM
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Until 1994, we had no children born into our family with Autism.  If you've ever known an Autistic child, you know that any child with it would be quite recognizable.  But since that date, we have had 2 children born into our family with Autism and 1 with borderline Autism out of 4 children born since that date.  The numbers don't make sense or add up.  Someone knows what is causing this and they are making millions of dollars from that secret.  Our history is rife with instances of the wealth of a few taking priority over the welfare of the many. 
Mar 25, 2013 12:22PM
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What will destroy America is not some meteor, North Korea or Iran. The very old and the very young will.  We have less and less workers paying into SS and more and more seniors living and collecting longer.  And if you believe the autism statistics, virtually no family dealing with autism can possibly afford lifetime care for someone, especially when the expenses start very early in life for care and last for what, 70+ years. So out of necessity we are on the road to becoming a socialistic country.  Guess whose wealth is going to be grabbed, one way or the other, to pay for all of that.
Mar 25, 2013 12:18PM
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What the hell is wrong with some of you the point is the parents do pay for there kids!!! I have the solution lets just throw everyone off a cliff!! Autistic, Diabetic, Cancer, Heart problems, high blood pressure, 10lbs over weight, ADD, premature babies,  Cold, Flu ect.. No treatment, No Doctors, Just jump off the Cliff!!! Stop giving welfare to people who have never worked, or sit at home use drugs, drink all day, sell there food stamps or aren't even legal. 
Mar 25, 2013 12:53PM
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Continued from below 

 

Our politicians still think they can throw dollars at foreign countries with no hope, anger and religious hatred and sooth the natives, well that doesn't work. Only a few in those countries ever see any of the dollars we throw at them and usually it's the dictators and their cronies getting the benefit of our assistance. But with populace appraising money won't work so we need to rethink our usual mode.

 

My rant is over other than I certainly hope our genius politicians and their media tools have something more astute than deception to solve our countries problems because their simplistic propaganda games and lack of sincere honesty in assessing our nations problems pathetic.

Mar 25, 2013 1:27PM
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If research finds that it is the parents late age of conception, or if it is some other outside influence, will the government be allowed to force a childless restriction on the aged parent-to-be, or a restriction on vaccines?  Or should we just keep spending until we run out of money and only the lawyers get rich and the autistic kid population keeps rising?

No one will be willing to sacrifice anything for the good of the country, because everyone is entitled to breed when they want and ask for assistance later.

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