Having an autistic child can be as big a challenge financially as it can be psychologically.

Parents often spend thousands of dollars in the hopes, fleeting as they may be, of finding a cure for the exasperating illness. Autism Spectrum Disorders are developmental disabilities that affect one out of 110 children -- a number that includes my four-year-old son, Jacob.

My wife and I are lucky that Jacob is defined in the autism world as "high functioning." That's medical jargon for "not too bad, all things considered." But like all autistic kids, he can have issues with change. Transitions from one activity to another can be problematic, particularly when things go awry.

Jacob once nearly had a meltdown when my wife said she might have to drive him to school because his bus was late. That "crisis" was averted when the bus eventually showed up. Turns out it was driven by a substitute, and that change freaked out other autistic children -- who refused to board the bus. Scientists are trying to figure out why autistic people are so rigid in their thinking and why the disease affects mostly boys.

Taking Out Second Mortgages


Having an autistic child can present seemingly nonstop challenges for families as the constant stress takes its toll. But the notion that parents of autistic children have a divorce rate of 80% was proven to be a myth in research released last year.

Still, I can understand why families take out second mortgages to pay for costly and controversial therapies and diets, even though many experts are skeptical that treatments like chelation and hyperbaric chambers truly work. I can even sympathize with those who cling to the now-discredited notion that autism is somehow connected to vaccines. However, not vaccinating your children against childhood diseases is about as reckless an act that a parent can undertake.

Jacob's quirks and obsessions are manageable, most of the time. Nonetheless, he needs assistance beyond what he already gets from his excellent public school program -- and that assistance can come at a steep price. A weekly series of $160-an-hour, private occupational therapy sessions have done wonders for Jacob, but they're not covered by our health insurance.

We are lucky, however, because we live in New Jersey -- one of the leading states when it comes to autism services. Many parents elsewhere in the U.S. wind up paying out of their own pockets for programs we get for free.

An Unmet Demand for More Doctors


And the costs associated with autism continue to grow. "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.

Given the huge spike in autism diagnoses over the past few years, demand for doctors who work with the illness is surging. Our school district suggested we hire a specialist to monitor Jacob's progress. But in our region the wait times for such doctors now approaches three years at some hospitals.

"It's awful," says Dr. Susan Hyman, division chief of neurodevelopmental and behavioral pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center. She's one of several hundred doctors in the U.S. who are experts in autism. The wait time for appointments at her office is several months, but she notes her specialty attracts few residents. "What we do is not glamorous, but l sure have talked a lot of parents thorough toilet training," she says. "My product is my time and my expertise. I can't make more of that."

Jacob's overall prognosis is excellent. His teachers are optimistic that he'll eventually be mainstreamed into the public school system. Several days ago, Philadelphia's NBC-10 used the term, "a lifetime of misery" to describe autism in a promo for a news report. That TV station couldn't have been more wrong. My son is pretty happy, as are many of the autistic children I have met.

But they can easily be misunderstood and in turn misunderstand the world around them. Making sure he has the tools he needs to be a success in life is a cost my wife and I will gladly shoulder.

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tina

Are you just letting us know this or what? Are you suggesting that those with autistic kids put the kids in a home because they are too costly?

January 14 2011 at 6:12 PM Report abuse rate up rate down Reply
1 reply to tina's comment
taraterm2

No generally they are put in homes because their behaviour are too much for the parents too take.And eventually, all seriously autistic people need to live somewhere...group homes are one option.

April 07 2011 at 5:47 AM Report abuse rate up rate down Reply
kamdrgon

It is NOT discredited totally re the connection between vaccinations and autism etc. Mercury IS poisonous in the form of thimersol, which has been used in vaccinations. Not to mention other substances within the vaccines that are dangerous. And it's not just the substances in the vaccines, it is the number of vaccines given to INFANTS in recent times that is extremely controversial, now that parents have reason to question this relatively recent change. I remember as a new mom in 1987, sitting in the pediatrician's office for the very first time, being told the baby should have this, this and this vaccine and me sitting there reading all the disclaimer information. I feel like a fool, now. If there were no danger, why do they insist on handing this information and telling us to read it first. Vaccinations are by no means off the hook for this.

January 14 2011 at 2:45 PM Report abuse +1 rate up rate down Reply
3 replies to kamdrgon's comment
Angela

If vaccines are the cause of autism, how come autism isn't at epidemic proportions in any industrialized nation except the U.S.? Don't you think kids in other countries get any vaccines? And do you really think they are all made differently, when most, if not all, vaccines essentially work the same way?

January 14 2011 at 2:21 PM Report abuse rate up rate down Reply
1 reply to Angela's comment
lee1799

Check the vaccination schedules of other countries compared to the American Pediatric Association and CDC recomendations. The amount that we give our children within the first few hours/days/months and yrs of life are almost double. Compare the US to the UK which is similiar, and they have the same epidemic as us. I am not saying don't vaccinate. I am saying spread them out so children are able to handle them. And how much do you think drug companies are testing the safety of them. Think about how many drugs that are being recalled after the fact. It's just worth looking at because no one has the answer. One in 90 boys in my state have autism. Doesn't that scare anyone?!! Shouldn't we find the answer before it's one in 50, one in 30 etc....

January 14 2011 at 5:04 PM Report abuse +1 rate up rate down Reply
1 reply to lee1799's comment
Allie

In MIssouri the rate is 1 in every 44 boys is autistic. That does not include the ones misdiagnosed as ADHD, which happens often.

November 27 2012 at 8:19 AM Report abuse rate up rate down
Sally

Jonathan, you are just starting. I have a high functioning autistic son, 34, just finishing his Ph.D. in Engineering and a not so high functioning autistic son, turning 30 next week. As few doctors as there are who know anything about autism now, it is still a lot better than it used to be. At least now, people look at biological mechanisms instead of psychoanalyzing the parents. Still, most of what you find out there is junk, and often destructive junk at that. You may rejoice in the fact that most autistic kids get better no matter what you do or do not do. Usually the higher the IQ, the better they do in the long run. That does not keep them from being exhausting and frustrating, but you will get through it. You and your wife are the best authorities on your son. You see him the most. You know what he can and can't do. You understand what he means more than any stranger (except maybe another autistic person), no matter how "expert'. Trust yourselves. Experts come and go. Treatment fads come and go. Keep your eyes and ears open and you will find out what works for your son. Whether or not it works for someone else's son is irrelevant. Be good to yourselves. This is an ironperson race.

January 14 2011 at 2:03 PM Report abuse +1 rate up rate down Reply
pawsvacationcare

How to make sure you don't have an autistic kid: Use birth control. If you really want to be a parent, adopt.

January 14 2011 at 1:56 PM Report abuse rate up rate down Reply
2 replies to pawsvacationcare's comment
taraterm2

what if your adopted child turns out to be autistic? give him back??

April 07 2011 at 6:00 AM Report abuse rate up rate down Reply
Allie

Birth control is only 97% effective, and can cause birth defects.

November 27 2012 at 8:20 AM Report abuse rate up rate down Reply
pawsvacationcare

Euthanasia should really be a legal option. Innocent, healthy animals are "put to sleep" daily - why not people whose lives are just miserable and create such a burden. Think about it.

January 14 2011 at 1:55 PM Report abuse -1 rate up rate down Reply
3 replies to pawsvacationcare's comment
lewzoo

"not vaccinating your children against childhood diseases is about as reckless an act that a parent can undertake"

That statement is reckless and irresponsible. Perhaps the author should do some comprehensive research regarding childhood vaccines, regarding the full risks involved, not just autism-related, but ALL risks.

January 14 2011 at 1:40 PM Report abuse +2 rate up rate down Reply
1 reply to lewzoo's comment
taraterm2

Have you walked through a Victorian cemetary lately??? Do you realize that 150 years ago it was totally routine to lose 2 or three kids at a time when sickness hit a village??

April 07 2011 at 5:53 AM Report abuse rate up rate down Reply
jackgrenan

sorry i was unsure my 1st post was accepted Jack Grenan

January 14 2011 at 12:59 PM Report abuse rate up rate down Reply
jackgrenan

I am amazed by the determination of parents who work so hard with their challenged child and never give up. I work with menatlly and physically challenged children IF you want/need to reach out I can be reached at jackgrenan@netscape.net or 12318210290

No I am not trolling for clients, I detest that! I know personal and family pain and frustration so I offer to help. I am in Michigan so 95 % of the people I help are in other states anyways...........

With Care & Blessings Dr. Jack Grenan LLP

January 14 2011 at 12:58 PM Report abuse +1 rate up rate down Reply
kimc4444

The number of autistic kids is sixty out of a hundred. Sounds like an epidemic to me. There is no question in my mind that autism is caused by vaccinations given the research from RELIABLE sources. However, what parents need to know is that this has become a money driven cottage industry that ruins kids lives not to mention what the family has to go through. Another little known fact is that the government has admitted in court that vaccinations cause autism. (Of course they do not want the general public to know this.) And, it is false that you have to vaccinate your child to attend school. Parents need to research this as one principal went as far as wanting to jail parents who would not vaccinate their children. Another little known fact is that there is a cure called Chelation Therapy that, simply put, puts a type of magnetic metal into the body and it flushes the mercury out and the child is then normal. It is not an easy protocal and it works on some kids. (My opinion is that the success of it relies on the expertise of the doctor who will do it as many won't.) So what is the motivation of big pharma and the government besides money? A future of people who will be unthinking voters and worker bees for the government. Makes sense to me. A good place to start research is jm@mercola.com. Dr. Mercola has a few articles on the truth of this problem as he does with so many other issues.

January 14 2011 at 12:54 PM Report abuse rate up rate down Reply
1 reply to kimc4444's comment
taraterm2

Uh..its more like one in 150, according to the latest reports.

And a huge reason is, school districts used to wait until you were 5 to get you labeled with an official problem, and then and ONLY then could you get early intervention which is EXTREMELY expensive.Nowadays, fearing lost time and lawsuits every toddler who isnt hitting the mark is being labeled "autistic" so that they can get into classess as soon as possible whether they need them or not.

Also, a generation of kids put into day care at 3 months, growing up as latch key kids on a diet of TV and video games hasnt helped this generations social skills much.

April 07 2011 at 5:57 AM Report abuse rate up rate down Reply
1 reply to taraterm2's comment
Allie

The official number as of 2010 was 1 in 88. Thats why Autism Speaks uses the slogan 1 in 88 can't wait. That is nationally, in the United States. In Missouri it is 1 in 44. We have entire schools devoted to autistic children.

November 27 2012 at 8:24 AM Report abuse rate up rate down