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Autism's burden reflected in family incomes
March 19th, 2012
12:02 AM ET

Autism's burden reflected in family incomes

Raising children brings financial challenge for many families, but especially for parents of children with autism. And the magnitude of that burden is a lot bigger than you may think.

A new study in the journal Pediatrics finds that overall earnings in families with children with autism are 28% ($17,763) less compared to families whose children do not have health limitations, and 21% ($10,416) less compared to families with children with other health limitations.

The dichotomy is striking in the mothers' income: Mothers of children with an autism spectrum disorder tend to earn 35% less than mothers who have children with different health limitations - in fact, $7189 less - on average. Compared to mothers of children who do not have health limitations, those with autistic children earn 56% less, which translates to an average difference of $14,755. There was no average difference in fathers' incomes, however.

Families in which a child has an autism spectrum disorder are 9% less likely to have both parents working than other families.

About 1 in 110 children in the United States has an autism spectrum disorder. Autism is a developmental condition characterized by difficulties in social interaction, language and behavior; symptoms usually start before age 3. There is no cure for autism, and behavioral interventions are quite costly. But experts say earlier treatment is better.

A person with autism costs an average of $3.2 million to society over his or her lifetime, according to a 2007 study. Adult care and lost productivity are the biggest sources of that amount.

Researchers wanted to look at the cost from a different angle: The effect on family earnings.

Using a large nationally representative survey, researchers identified 261 children with autism spectrum disorders. They also included 2,921 children with another health limitation and 64,349 children without a health limitation.

The income discrepancy among families with a child with autism is likely due to mothers leaving the workforce and taking lower-paying jobs, said study co-author David Mandell.

These mothers aren't just staying at home to take care of their children with autism, says Mandell, associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania.  They're on the phone arguing with their insurance company about getting services, going to multiple meetings about school, and shuttling kids from provider after provider.

"It’s not that caring for a child with autism is more difficult per se than caring for a child with cerebral palsy, for example, or intellectual disability," said Mandell, associate director of the Center for Autism Research at Children’s Hospital of Philadelphia. "But the service system for kids with autism is not as well defined. There’s not as much appropriate treatment available for these kids."

Mandell and colleagues thought that fathers' income might be higher in families with children with autism, to compensate for the mothers' loss of income. But they found no average difference compared to other families in the study.

"There’s a big cost of not providing care to children with autism. That cost is going to manifest in different ways," Mandell said. "One of the things that’s going to happen is: It’s going to create an economic hit for society as a whole in another domain."

The study results are no surprise to Peter Bell, executive vice president for Programs and Services at Autism Speaks. Bell was not involved in the study.

Bell's 19-year-old son has autism. When the family got his diagnosis in 1996, Bell and his wife created a home program for their son with six to seven therapists coming in every day, providing one-on-one behavioral treatment. "Literally it was like running a small business ourselves," he said.

Many children with autism additionally have to travel to speech and occupational therapy sessions.

"It does require at least one person to almost be dedicating their full time effort, which is again, what is coming out of this study," Bell said.

Sometimes parents of children with autism can return to the workforce, depending on the needs of the child. Some go to work for Autism Speaks, Bell said. In other cases it's not possible. Bell's wife left the workforce in order to help her son with autism, and has never returned.

There's also the issue of insurance. As the study notes, "private health care insurance companies frequently severely limit or do not cover autism-specific therapies." There are some 26 states that have mandates requiring coverage for autism treatment, but only about half the people in those states are in insurance plans subject to the mandates, Mandell said.

But there is a provision in the federal health care reform legislation, taking effect in 2014, that will require state insurance exchanges to include behavioral health treatments as one of the essential benefits.

Autism speaks offers this 100-day toolkit for families of a child with newly diagnosed autism.

There are some limitations to the Pediatrics study. First off, the children with autism represented a small fraction of the total considered. Also, it is an observational study, and it does not show that autism causes this income discrepancy.

But to Bell, it is a confirmation of what he has been seeing in the community for more than a decade.

"This should be another reminder to the federal government and state government that autism is a significant public health challenge," Bell said of the study. "It is an emergency."


soundoff (93 Responses)
  1. MrKnowItAll

    Volumes and volumes of data on diagnosis, treatment, awareness, and now financial burden! Where is the volumes and volumes of data on how much money is made by the non profit organizations, the Medical Industry, and Drug Companies because the cause is "unknown"! Stupidity is unfortunately not a crime!

    March 19, 2012 at 00:19 | Report abuse | Reply
  2. S K

    I am the mother of a child with an intellectual disability. I respectfully disagree with Mandell's statement "But the service system for kids with autism is not as well defined. There’s not as much appropriate treatment available for these kids."

    I have found the opposite to be true. I don't work at all anymore because of my son's needs. And there are no coordinated therapies to shuttle my son to and from. In fact, we don't fit in anywhere. Most of my time is spent on the fringe of autism support groups piecing together activities to help my son. He will even start school late next year so I can teach him to read because we haven't been able to get him the targeted help he needs through the school system; a school system that has an entire staff devoted to supporting children with autism.

    In spite of my son being much more impaired than many of the children we know with autism, it took two tries several years apart to even get a small amount of assistance from the county. Which is nothing compared to the resources most families of children with autism have available to them.

    March 19, 2012 at 08:10 | Report abuse | Reply
    • James Hawk III

      Get in touch with the folks at http://www.wrightslaw.com/. They were instrumental in getting our county school system to provide the correct services and environment for our autistic son.

      March 19, 2012 at 08:21 | Report abuse |
    • Katie

      I know what you mean. My son had learning challenges too, but since he wasn't autistic or dyslexic or any of the more "common" learning disabilities, he either got no help or he was treated as though he needed the same kind of help those very different disabilities needed, which didn't do him any good. Another HUGE beef of mine is that the school systems tend to equate being smart with being speedy. My son is very smart, but he's not that fast about regurgitating what he knows and understands. In school that inability to read quickly or to process an in-class question and answer discussion as fast as most kids or to take a test within a structured time limit was all too often viewed by teachers and other staff as ADD or just slacking off. The anxiety such situations and outcomes produced only compounded the problem. The school didn't know what to do for him because he didn't fit neatly into the autism or dyslexic boxes and they were much more inclined to blame him or me for their inadequacies. Autism may not have a cause or a cure, and may not even have a set method of help, but there IS help for it. There isn't any help for kids like my son, with a condition loosely called 'slow or inefficient processing with a related anxiety disorder', something the school psychologist said was very common and in her opinion was the number one reason for smart kids dropping out of school.

      March 19, 2012 at 12:05 | Report abuse |
    • Guest

      I agree with you S K. There are dozens of programs for autistic kids while many other disabilities are left by the wayside. I work with a number of different healthcare professionals and I had an interesting conversation with the head of an autism group. He stated that one reason it may be difficult for certain parents to find "good treatment" for their child with autism is because they don't actually have autism. Many parents refuse to accept that their child has a different type of mental impairment. To them, "autism" socially more acceptable. To a degree, this is true. One of my own friends diagnosed her child as possibly being autistic without even seeing a doctor. It was an easy excuse for her child not being able to read at a certain age. I now question the diagnosis before I even consider what treatment is so-called "needed."

      March 19, 2012 at 15:44 | Report abuse |
    • Rob

      Katie – Your kid may actually be smarter than the others. Perhaps smart enough to fully process things instead of regurgitating. It takes time to connect the dots. Too bad we live in a fast society where connecting the dots is secondary to having the right answer. I hope you can help him with his education and understanding of the world around him, because between that and being able to 'connect the dots' nothing will stand in his way... Other than affairs of the heart of course. But that is a different topic!

      March 19, 2012 at 16:32 | Report abuse |
    • SA

      I feel for you and know the struggles you experience first hand. I agree with James Hawk III about Wrights Law. You might need to hire an attorney to fight the school system or county. You might also consider moving to a town and/or state that provides the services your son needs. Depending where you live plays a great role in your child's education. Many school systems are not equipped to appropriately meet children with different needs, even for autism and dyslexia. A parent has to be willing to fight her local board of education to get the appropriate services for her child. As the say goes "the squeaky wheel gets the most grease."

      March 20, 2012 at 02:21 | Report abuse |
    • SA

      For SK, Katie and any other parent who is having touble getting appropriate services from their local schools/board of edcuation, these are two books I highly suggest reading:
      1. How to Compromise with Your School District Without Compromising Your Child by Gary Mayerson
      2. From Emotions to Advocacy, 2nd edition (The Special Education Survival Guide) by Pam Wright and Pete Wright
      Good Luck

      March 20, 2012 at 08:41 | Report abuse |
    • Leslie

      I am sorry for your difficulties, but PLEASE do not think having an autistic child is a walk in the park! I am the aunt of a 4 year old who is on the spectrum and non-verbal. My sister spends a heck of alot of time fighting for support for her son - remember earlier is better, but it seems no one wants to start working with them until they are older. I spend one weekend a month with her helping out as her husband is a military reservist and has to go out of town to drill one weekend a month. I take leave (I am in the military fulltime) to accompany her to medical appointments sometimes because he is definitely a handful when he is out of his normal environment. I'm glad to be available after having been deployed overseas for the last year - which meant having to totally reacquaint him so he would accept me touching him or looking at him. When they take a vacation once a year, he gets physically sick and they often have to come home early - because he can't be out of his environment. We spend time trying to teach him sign language and using some programs on the iPad to communicate. Forget potty training - and how long before he no longer fits children's diapers? His diet is very restricted and he's not the only child in the family, so multiple meals at mealtime. He has to take alot of different medication, has many gastro issues, and cannot be babysat by just anyone - it must be a person he is familiar with (like a family member). He is a sensory seeker, so crashing things feels good to him – and he has a specially weighted blanket so he can sleep. We don't know if he will EVER be in a mainstream school – late or otherwise. This is just the beginning of daily life - never mind all the fighting with the programs that you seem to think are so available - and we live in Maryland – right next to the nation's capital. It's not as rosy as you might think.

      March 20, 2012 at 11:51 | Report abuse |
    • DrMom

      S.K.,
      I agree wholeheartedly with you. Although the emotional burden of ASD is dramatic and difficult, I think that those families and children have some of the best support systems imaginable. What they have, would be a dream come true at my house.
      I am the mother of a child who has many of the same needs as a child with Autism, but doesn't actually have Autism. I find that because I don't get the power of the Autism lobby, my son doesn't get much of what he needs. Fighting for the finances of his therapy needs is a full-time job (at volunteer payrate) and then trying to get everything scheduled when we are on the wait-list behind all the ASD kids is even harder. It costs a fortune, insurance only pays for about 4 months worth of the cost for each year (we live in an ASD therapy cost mandated state, but he isn't dx'ed ASD) and I am barely working now because he needs me here doing all of this. I am already dreading what it is going to look like when he is old enough for school districts to become part of the mix, because while we have top notch ASD support classrooms and a whole team of teachers and specialists devoted to ASD, there is nothing for us.
      In my pre-mommy days I specialized in therapeutic work with ASD kids and families, making sure their needs were met. I know all the resources, but they won't work for my child.
      Having any special needs child can be difficult, the challenges are many...but so are the rewards

      March 27, 2012 at 10:06 | Report abuse |
  3. Sherry Foster

    What I thought was odd that there was no mention of single parents. The full burdon falls on these Mothers/Fathers even worse. As for me now that my son is now nine tbrouh mpst of his major intervention, the cost continues because my son is very productive I'm constantly having to search out activoties to keep him active. THERE ARE ALOT OF GREAT AUTISM SUPPORTED ACTIVITIES FOR YOUR KIDS. BUT UNLESS YOUR INCOME MAINTAINS AT LEAST A 10 PERCENT RATE OF INFLATION TO KEEP UP WITH THE COST OF FOOD AND GAS AND COST OF THESE AUTISM SUPPORTED ACTIVITIES MOST SINGLE PARENTS AREN'T FINANCIALLY STABLE TO KEEP UP BEDAUSE THEY ARE JUST GETTING BY.

    March 19, 2012 at 08:44 | Report abuse | Reply
    • Bill

      There are very few single parents. Most children have both parents still alive.

      March 19, 2012 at 09:42 | Report abuse |
    • I call BS

      Where is your proof of that, Bill? How do you know?

      March 19, 2012 at 14:37 | Report abuse |
    • Rocksor

      BIll....a single parent is a parent who is no longer married. What you are referring to is a widower.

      March 19, 2012 at 16:24 | Report abuse |
    • Rob

      Bill's got a good point. A child may have two parents even though they are divorced. Perhaps the child even gains a third or fourth parent. As for the stats, I'm not aware of whether it is 'most' or not. Single parent 'used' to be generally accepted as an unmarried woman solely responsible for a child. Now I think it is used by anyone who isn't married and has a child, even though the parental responsibilities remain shared.

      March 19, 2012 at 16:42 | Report abuse |
    • jane

      In theory they are shared. I wonder how many moms and dads who dont live together split the dr visits, the teacher meetings, the IEP meetings, the therapist visits etc? I have a feeling its one parent doing it, regardless of which one.

      March 19, 2012 at 23:48 | Report abuse |
    • amy

      I am a single mom and truly single my childrens father has disappeared! I get no child support he doesn't see them, I can't work because of my 6yr old son have aspergers(autism) and please anyone tell me where all these support systems are for people who cant afford to pay for them? How dare some of you say its easy and there is support for asd children!!! I now have to homeschool him bc of how horribly the school treated him!! I fight tooth and nail for the insurance to cover anything and he still doesnt have the services he needs!! I have no support system at all and he was diagnosed by more than 1 doctor so he was NOT MISDIAGNOSED he also has numerous health problems too, again please tell me the programs that will help with his daily life problems that I don't have to pay for out of pocket or the insurance company will pay for!! even someone with a good income cannot afford the services an ASD child needs without the insurance paying for it! And no there are not defined services either! Alot of the research done on asd insurance companies consider still experimental or not a fact so they dont have to cover for that service!!! How dare some of you sit there and say how easy asd children are when you dont have one to care for or pay for!!!! Until you personally experience dealing with the daily battles of an asd child you have no right to say its easy! And sure programs are advertised and schools are supposed to have classes for them, THAT DOESN'T MEAN YOU CAN AFFORD THE PROGRAMS WHEN YOUR INSURANCE DENIES THEM, AND IT DOESNT MEAN THAT THE TEACHERS OF THOSE PROGRAMS WONT ABUSE YOUR CHILD!!! do some research on some of the horrific things teachers in public schools do to asd children because they figure well they can't tell anyone!! And it does happen! My son can speak and he had 2 teachers abuse him mentally in school, and it did happen because the teachers aid confirmed it!!!! It makes me sick when people who are not in the situation themselves can sit there and say oh theres so much help for asd children NO THERE IS NOT!!!!!!!!!

      July 22, 2012 at 10:27 | Report abuse |
    • John

      I'm in the same boat as Amy. I am the single father of a 14 year old homeschooling son, and my exwife, his mother is very busy taking care of her invalid parents, and also my son has issues with her and doesn't usually want to do anything with her, which hurts her feelings and makes her shy about coming around. Also makes her blame me. And she has no income. And I'm 62, and retired on SS. I do odd jobs for neighbors (used to be a contractor) for a little extra money and we get free rent from another relative so just barely getting by, but not nearly enough. I wish the article had addressed single parents too

      July 31, 2012 at 03:59 | Report abuse |
  4. EdwinZJackson

    Usually, with most insurance today, the amount the insurer pays the docs is already agreed upon. If you have insurance B, then it doesn't matter which doctor you go to, insurance B will pay the same. Only thing you can shop around is the health insurance check "Penny Health" for health insurance ideas to save money.

    March 19, 2012 at 09:07 | Report abuse | Reply
    • KJC

      That's not totally true. Insurance companies usually negotiate contracts for rates independently with each doctor's group. However, a group may contain hundreds of doctors that do end up on the same rates. There may be a standard rate that the insurance company offers to start the negotiation, but that is often negotiated to something different by the time the actual rates get signed.

      March 22, 2012 at 16:52 | Report abuse |
  5. EdwinZJackson

    Well, But for many hardworking families, affordable insurance can be hard to find. The new "Penny Health" is giving you more control over your family’s health care by expanding your options for health insurance and making them more affordable.

    March 19, 2012 at 09:08 | Report abuse | Reply
  6. Collins Dad

    Great article although I agree with SK that many other intellectual disabilities have the same issue as children with autism. I think that the overwhelming issue is that when you have a child with a special need like autism, we as the parents have so much more to take on then just work and we have to choose jobs that will allow us to be with our child and make sure that he or she gets the best possible care.

    Those who posted before me have some great ideas and they are all appreciated but it appears that you do not have a child with autism. Trust me when I say that we as parents have tried everything to get bills paid by insurance and for the most part are stonewalled. Unfortunately you can't stop the therapy to wait for the insurer to decide if they will pay or not. It is just not an option. Fortunately about 29 states now have insurance that covers up to $30,000 per year in related costs. For the rest of us who do not have insurance in our state, you either have the money to pay for it....or you have few options.

    I think that it is important that people who do not have a child with autism or other special need, understand the major challenge that we face. In terms of finances I have literally put my son through college between the ages of 2-9. $150,000 + out of pocket expenses....and I only had 20 months to save for it. Don't even get me stated on how much interest I have paid in loans and credit card bills that came along with this. Luckily we were diagnosed well before the recession and could get these loans. Now I don't know how parents do it.

    Great article.

    March 19, 2012 at 09:38 | Report abuse | Reply
    • Rob

      I agree 'Dad'. Life pitched parents of special needs children a curveball. That will have a negative affect on other areas of life which cannot be candy-coated. Insurance companies and bureaucracy does not help simplify things at all.

      March 19, 2012 at 16:48 | Report abuse |
  7. tacc2

    Wow, I love how the parents in these comments seem to think that we, as a society, owe their children and them special assistance. I think we should offer very basic assistance, like maybe food support but that's it. I'm sorry, but when you decide you are going to have children you do so with the full awareness that they may have problems. Their problems are YOUR responsibility, not mine. No one forced you to have children. And, "A person with autism costs an average of $3.2 million to society over his or her lifetime...", Are you kidding me? I'm not saying we should let them starve in the streets and I am for us as a civilized society offering some limited help, but expending an inordinate amount of resources on someone who will return almost none of them just doesn't make any sense.

    March 19, 2012 at 09:39 | Report abuse | Reply
    • Jana

      Wow, you are an idiot.

      March 19, 2012 at 09:55 | Report abuse |
    • cen

      Aside from general compassion – something that makes a society worth living in – investing in early intervention can greatly increase the likelyhood of a person being able to be a productive member of society as they get older. It makes sense ethically and financially.

      March 19, 2012 at 10:13 | Report abuse |
    • Erin

      tacc2 it seems you were born 80 years too late and in the wrong continent...you could have been Mengele's right arm. What a thrill!!

      March 19, 2012 at 10:21 | Report abuse |
    • julie

      Well TACC2 – if you have had surgery, or been in intensive care in the past 10 years you were likely kept live and breathing by equipment designed in part by autistic adults.

      Would you prefer that my co-workers and I (several autistics with advanced engineering degrees) had been left to starve as children or not educated?). Afte rall what use does society have for patents that keep lungs from collapsing, ensure precise drug delivery, or keep premies alive.

      March 19, 2012 at 10:46 | Report abuse |
    • Heidi

      We have never taken a dime from the government. However, the way the system is set up you must put your child on state assistance (in PA it is called the ACCESS card) to get some services – i.e. teacher's assistant, just to go to autistic day care, etc. We have refused to do this. These kids need to be able to access these services without going on "welfare". On the other hand – not one of us I am sure expected to have a child with needs like this. We did not ask for this. I hope karma comes around to bite you in the ass, like it did us – because you could certainly use some compassion.

      March 19, 2012 at 11:07 | Report abuse |
    • Karis

      Through intensive therapy my son is now funtioning in society with Aspergers. With early intervention he was able to develop the skills that he will use for the rest of his life and be a productive member of society. Without the programs that we have utilized he would be more of a burden to society. The therapy was paid for with loans, my work health care and state assistance. Autism is like any other illness or disability, preventive care will save money in the long term. Furthermore, the way the Asperger's brain works, I would love to have him in the engineering design room with me when he is older. He thinks outside of the box and can see solutions that I could never dream of. Aspergers is a gift and a burden. Therapy can ease the burden and leave the gift behind, so these children can exell our expections.

      March 19, 2012 at 11:47 | Report abuse |
    • Pamela McElmeel

      TACC2 - Nice Troll Job. I suppose if one takes you seriously, no one should have any kids. End of story. I mean, since the risk of two otherwise perfectly healthy adults is high that a child will need something from the community resources at some point in their young life, there's no way to predict it. So everyone should just stop risking babies at all. Taken to it's logical conclusion, that's what you just said. TACC2 - It takes a village. And when/if you have kids, you'll find that out.

      March 19, 2012 at 13:18 | Report abuse |
    • Elizabeth

      That was not only ignorant but it was ugly besides. So if I follow you, unless someone is guaranteed to be successful in life they aren't worth an investment? What about people with other diagnoses like cancer, diabetes, cerebral palsy,or just plain ignorance, like you? Everyone makes a contribution, some more than others. As the mother of an autistic son, I cna tell you that he DOES learn and does improve thanks to some great medical intervention==wish I could credit the schools but there isn't enough space here for that. Suffice it to say, he does the best he can and never stops trying to educate himself..a lesson you would do well to learn. perhaps some day when YOU get some awful disease and need help, your progressive ideas to provide "basics" so you don't "starve on the street" will come home to roost...

      March 19, 2012 at 19:28 | Report abuse |
    • jane

      wow...what is the cost to society of other disabilities or life style choices that people can control? Truly shocking your comments are. Should we not allow a person a heart transplant or AIDS meds? Or diabetes treatment? Shocking.

      March 19, 2012 at 23:51 | Report abuse |
    • A. Smith

      The Congressional Budget Office assessed the cost of Autism treatment. $0 net dollars to the taxpayer.

      March 20, 2012 at 09:41 | Report abuse |
    • MB

      HAVE SOME COMPASSION WE DID NOT ASK FOR THIS,BUT WHAT GOES AROUND COMES AROUND JUST BE CAREFUL WHAT U WRITE. HOPE UR KIDS OR GRANDKIDS DONT END UP WITH AUSTISM.

      March 20, 2012 at 10:11 | Report abuse |
    • Terina Plyler

      Einstein was likely autistic (look it up!) There goes your 'idiot' theory.

      March 20, 2012 at 10:53 | Report abuse |
    • Leslie

      Guessing your parents knew up front they would have a jerk for a kid – lucky for them!

      March 20, 2012 at 11:57 | Report abuse |
    • Todd E.

      You should read up on Tiergartenstrasse-4 (Aktion T4). What you say is repugnant. It only doesn't make sense if you are a Nazi.

      March 20, 2012 at 12:36 | Report abuse |
    • Ken

      You are a sad human being. My Autisic son has more value to this society then you. He needs 24 hour care, some additional health care from the goverment that the private sector will not provide, special educational facillities. Yes he is a burden on society. Yes his parents alone can not meet his need. But he gives something back to all of us something that you can not comprehend. He gives back LOVE. Something that you are truly missing.

      March 20, 2012 at 13:13 | Report abuse |
    • Danielle

      You are a first class jerk!

      March 20, 2012 at 20:10 | Report abuse |
    • Ciel

      I agree with you Tac 100 percent. People need to stop complaining over the consequences of their breeding. STOP HAVING BABIES IDIOTS.

      March 21, 2012 at 12:48 | Report abuse |
    • Moni

      I hope if you ever become intellectually incapacitated due to a stroke or head injury, that people are more compassionate toward you then you are toward my child and those like him who suffer from autism.

      March 21, 2012 at 17:08 | Report abuse |
    • KJC

      My uncle said exactly the same thing as you until his grandchild was born with a disability. Now he's so thankful for all the services the county and state offer for his grandkid. I definitely understand people who don't want to help those who have made poor decisions or are at least somewhat capable of helping themselves (not that I agree with that person who doesn't want to help, but at least I understand it.) However, when it comes to having a child with a disability, it could happen to ANYBODY, and the only reason you don't care is because it has never happened to you or anyone you care about. But I guarantee if it was your grandkid, you'd be fawning over the teacher who helps, the services to help, etc.

      March 22, 2012 at 16:57 | Report abuse |
  8. ES71

    We are a rich society and we can afford to bear the cost, even though the cost is born disproportionately by the families affected. In poor societies such kids are treated a little better than animals because of the costs associated. Both parents have to work so that the rest of kids can survive as well.These are hard fact and I am not sure what could even be done.
    I have healthy kids and it is a problem to take time off work to take them to regular doctor checkups a few times a year. Until the culture in this country changes and workplace becomes more family friendly I don't think we can expect much improvement for the parents. Many of religious right don't even see anything wrong with women not able to work. They feel that women should stay home anyway so why make workplace easier for them? So, many mothers of disabled /autisitc kids have to quit working or can only work very low paid parttime jobs.

    March 19, 2012 at 10:12 | Report abuse | Reply
    • Natalie

      I agree with you, we have to support families who have kids with autism, unfortunately we use the money for wars and paying 3/4 of World's governements!

      March 20, 2012 at 18:26 | Report abuse |
  9. Shell

    We have a child with autism as well as a child with developmental disabilities and I do see a difference in the help available to our autistic son. Many teachers, even SPED teachers, dont always seem to know what to do with him, and the services offered through the state are amazing for our other son, but our autistic son does not qualify for many of those. As for the poster who says society should not offer much support for these kids. I hope you are lucky enough to never face health problems that you can not pay for. In a 2 year period our oldest son suffered a viral infection, leaving him with epilepsy and mentally retarded, then our middle son was diagnosed with autism. After burning through our saving, then all our 401k money we spent a couple of years on the verge of bankruptcy due to all the medical bills and medication costs. We work hard but it is almost impossible to make it when I must stay home full time to help care for the boys. I do not expect society to fully support us, but do expect help with the extreme costs of having children with disabilities. It is what any decent, caring society does- care for those who can not care for themselves.

    March 19, 2012 at 10:43 | Report abuse | Reply
    • Really

      Unfortunately, it is many simple people's belief that hardship is somehow always self inflicted. Fortunately, there are many others that rightfully believe it is society's responsibility to help the less fortunate.

      March 19, 2012 at 13:18 | Report abuse |
    • jane

      Shell, I think the majority would disagree with that poster. Anyone, including him, could get a virus or illness and cost lots of money to treat and become a burden to society in terms of cost.

      March 19, 2012 at 23:54 | Report abuse |
  10. J.Crobuzon

    We both work, and he's grown to an adult, but we still have to watch everything and arrange our lives around him. Of course we make less; I turned down promotion after promotion to be able to get off in time to pick him up from school.

    March 19, 2012 at 10:48 | Report abuse | Reply
  11. Heidi

    I can't agree with this statement more:

    These mothers aren't just staying at home to take care of their children with autism, says Mandell, associate director of the Center for Mental Health Policy and Services Research at the University of Pennsylvania. They're on the phone arguing with their insurance company about getting services, going to multiple meetings about school, and shuttling kids from provider after provider.

    I spent most of last week with research and meetings with the school. I left a well paying job (making more than my husband) to take care of my daughter. No one helps you figure anything out – it's all on your own and you have to fight every step of the way – the up-side is that I can sleep at night knowing I am doing everything humanly possible to help her. Karma has gone our way too, since I had to leave work my husbands job has more than compensated for the loss of my income – we are very fortunate in that respect – although no doubt it would be nicer to have two incomes and personally I would love to go back to work. Besides financially it is definitely a mental strain. This is the first article on autism that I actually agree with.

    March 19, 2012 at 11:00 | Report abuse | Reply
  12. MTMommy

    Agree that there should have been information included regarding single-parent households. (And yes, Bill, there are far more kids with only one living parent that you obviously know. And living is a term to be used loosely as well). My son has Asberger's and it is very hard to maintain a job when you are constantly being called to the school for a child who is injuring themselves or others. Or who can't be in daycare due to sensory concerns. I pay a specialized nurse to care for him when I have to be working. I barely scrape by week to week because even if there were help available, or if i qualified for assistance I would still continue working. Because I too need to get out of the house and I am proud of the fact that I provide for my children and myself. But yes, it will always be at lower paying jobs than I had before because of the limitations my son has and the flexibilty I need in a job to be able to care for him. And Heidi is also correct. We don't recieve assistance but are "in the system" because the school district requires it. They bill the state for all services they provide as well. Public school isn't free either.

    March 19, 2012 at 13:19 | Report abuse | Reply
  13. Elizabeth

    My son has PPD (mild autism). He is able to see a psychologist regurly because his psych just changed his diagnose and my son's insurance pays.

    March 19, 2012 at 13:57 | Report abuse | Reply
  14. Rob

    It makes sense that a special needs child will take more effort and resources from their parents. That leaves the parent with less to focus on career or themselves. It's common sense that those who are free to continuously put 100% toward education and career will make more money.

    March 19, 2012 at 16:26 | Report abuse | Reply
    • Crocky

      Exactly. And since the employer's focus is keeping the business going, why should they keep people around who won't be there enough to focus on the job at hand? This is why for special needs kids, you really have to have two parents.

      March 20, 2012 at 09:41 | Report abuse |
  15. GinaCyrus

    As the mother of a beautiful 12 year old (nonverbal) Autistic child, I'm in total agreement with most of the comments made here about the financial burden the cost of caring for a child with Autism. Me and my husband have pretty much gone 'around' the system to help my son qualify for most of the programs that will help him become more verbally communicative, social, and to help him when we are no longer on this here Earth. Taking him to speech and ot when the school he was attending did not offer enough through the week, and just last week we found out that my son's insurance dropped him completely! My other two children are what society lablels as 'normal' were kept on the insurance! Now I'm in the process of trying to add him to my insurance here at work. Its been an impossible struggle since the time CJ was diagnosed at 18 months old.

    March 19, 2012 at 16:48 | Report abuse | Reply
  16. daddyofautisticangel

    There is a piece written by a single mother on the Autism Speaks website to go along with this study. It's a huge problem for any family, but especially a single parent

    March 19, 2012 at 18:00 | Report abuse | Reply
  17. cbr

    Children with special needs are diagnosed at a younger age all the time. The system has caught up with the problems that the families face. Grandparents are pitching in to make sure that their grandchildren with special needs can get the help they need. Insurance pays only a limited amount.

    I fear that the Republicans do not understand this problem or see the need for insurance coverage to help pay the costs associated with the disability. Current health insurance policies limit the amount paid for therapy. One hour per week is not enough to help a child who does not speak, cannot eat, cannot write, has emotional problems, etc.etc.etc.

    We need to love all our children in this country. They are our future.

    March 19, 2012 at 20:24 | Report abuse | Reply
    • Sly

      Well said! I had to have a bankruptcy for Medical Bills my insurance refused to cover for my son, who was born with a severe form of Recessive Dystrophic Epidermolysis Bullosa. It's profoundly sad that people with healthy children, who have no clue how expensive and time consuming having a child with special needs wants to overturn a law that would help us. They don't care, they never did, they never will. Like everything else in life... until it happens to YOU, you are clueless. Spend a day in my shoes, then we'll talk. They never do.

      April 11, 2012 at 11:25 | Report abuse |
  18. Catherine

    My son was diagnosed with PDD-NOS (a mild form of autism) at age three. He is now 17. My family spent over $100,00 in the first 5 years after his diagnosis on behavioral therapy, occupational therapy, and speech therapy. That was money we did not have just "laying around," it was our entire savings, our retirement, and any other money we were saving for the future. We were fortunate that we had the money at the time to spend, as it made a huge difference in his outcome and his behavior.

    After the first year of doing everything on my own, my husband eventually had to leave his job as an executive and open his own consulting business so he could be closer to home and help. We have three other children in addition to my autistic son, and while we would have been financially more stable to have my husband stay with his previous job, it was not physically possible for me to do everything for our autistic son and take care of our family. While my son is verbal and fairly high functioning, he still requires daily help with school and other activities that most teenagers can do independently. My husband's consulting business dropped with the economy and he has been looking for work for 3 years. I went back to work as a school teacher at my son's school, and we are barely making ends meet. My son's disability changed the course of our lives, but we are continuing to press forward. I am thankful I am still married, this article forgot to mention the divorce rate of families with autism is about 75% which creates an even heavier financial burden. I stand amazed thinking about the single parents who are doing this job alone – if you are a single-parent of an autistic child, please know what you are doing is incredible!!!

    March 19, 2012 at 20:57 | Report abuse | Reply
    • Natalie

      So sad that we as society do nothing to help these families. We have greedy congressmen and senators that get paid very well to help the rich!

      March 20, 2012 at 18:42 | Report abuse |
  19. kelley

    I am a truly single mom to a child on the autism spectrum. I adopted a 'healthy' child as a single parent. I had a great job and great health insurance. My "healthy" child is anything but healthy. I earn $10,000 per year less than I did before becoming his mom. I had to let my rental property go, losing more income. I lost a job after 5 years, being called to school, dr appts, therapy appts, CSE meetings, evaulations, etc. Too much time from my job. I have lost family and friends because they do not understand. My child 'looks' normal, so they don't understand the struggles, the lack of communication skills that he has. And insurance is severly limited. I pay for one of his therapies completely out of pocket. Our school district has offered next to nothing in supports for him. He has been segregated from his classmates, they illegally violate his IEP. Not much to do.

    March 19, 2012 at 22:00 | Report abuse | Reply
    • Crocky

      Made. Bed. Lie.

      Why should an employer keep you if your priority is your kid (as it should be)? That why it's better to raise kids with two parents.

      March 20, 2012 at 09:25 | Report abuse |
    • SkyQueen

      I know the struggle you are going through from the other end of the spectrum. I was diagnosed with Asperger's Syndrome when I was in 6th grade. Is there a charter school in your area? If there is, see if you could apply for your child to attend. I attended a small local charter school, and I believe that helped me get ready for going back into the main school district for where I lived. See if schools can cover therapies. My school covered Occupational and Speech Language therapies provided durring the day. I believe that helped my parents, who at the time were a hot dog vendor and a full time student. Also, see if you can connect with other parents who have special needs kids in your area and go to the same school as your child. See if they are having the same problems. It might be the school. Talk to the head of Special Education for the district. I wish you the best of luck.

      March 20, 2012 at 13:57 | Report abuse |
    • Maureen

      You need to find an advocate and perhaps an attorney Pro-Bono as a violation of your child's rights is a serious offense and any noncompliance if it were to reach legal proceedings would be deemed illegal and therefore the court would order that services be provided and time lost made up. Hope this helps : )

      March 23, 2012 at 00:54 | Report abuse |
  20. YES YES YES STUDY

    AUTISM IS ALL THE THINGS DISCOVERED THEY DONT HAVE A NAME FOR/ YOU HAVE TO LOOK BACK IN ORDER TO GO FORWARD

    March 19, 2012 at 22:47 | Report abuse | Reply
  21. Crocky

    Ummm...duh....mothers of special needs children typically have to take more time off from work to tend to their kids. Why should employers give equal pay for unequal work?

    NO ONE can have it all, folks. You have a special needs kid? You're going to have to sacrifice something, which is usually earning power. Can't handle that truth? Don't have a kid!

    March 20, 2012 at 09:24 | Report abuse | Reply
    • SkyQueen

      Do you care for someone with a form of Autism? If you don't, just SHUT UP!!! People who have children with Autism need the money MORE that the average family. Who will pay for the therapies hat will help them if the family can't pay? Who will pay for, JUST BECAUSE THEY HAVE A DISABILITY, their insurance rate increases? THINK BEFORE YOU POST CROCKY!!!!!

      March 20, 2012 at 17:29 | Report abuse |
    • Natalie

      Crocky, it wasn't parent's choice to have kids with autism. This disease is discovered after the child is born. While I think people should abort their unborns that have disabilities, I fully support them once the child is born. We all should help and pay for these children.

      March 20, 2012 at 18:47 | Report abuse |
    • kw

      Crocky,
      You've posted several uninformed comments with advice for parents of autistic children. In response: 1. People do not choose to have children with Autism or a spectrum disorder and 2. A two parent family is not always possible because parents have the right to leave a marriage when they are embarrassed or overwhelmed by the challenges their child faces. Usually (but not always) the single or married caregiver is the mother, who often must face discrimination in the community and at work (if she can work). I would have liked to see more information in the study about how much higher the everyday expenses are for parents who must replace damaged items or pay for special services out of pocket simply because their child can't understand the cause and effect of certain actions. Even though your comments were insensitive, I would never wish that you face the challenge of raising an autistic person to adulthood and then still have to keep raising them in your senior years. Unfortunately, my hope that you and others will somehow avoid this fate is unrealistic. Autism is starting to impact all families.

      March 26, 2012 at 13:08 | Report abuse |
    • Sly

      Crocky, we don't ask to have a child with special need. But apparently to YOU it's perfectly OK for a family to have to declare bankruptcy because the FOR PROFIT Insurance companies deny coverage to things the child NEEDS. People like you are the people that do not understand anything until it happens to YOU. You're a very sad, uncompassionate human being.

      April 11, 2012 at 11:28 | Report abuse |
  22. Terina Plyler

    I am a single mother of two autistic children. My definition of single is that I have not lived with my children's father in over 10 years since my children were 5 (the non-autistic one), 3 and 1. Their father has always been financially supportive, but until the children reached the age of 12, I had to depend on government services (food stamps, housing and medicaid, not welfare) and child-support to be able to take care of all their needs. Also, since the father lives 1 1/2 hours away he could not take the time to help with IEP's, therapy appointments, basic care, etc. Once the oldest two (both boys) reached the age of 12, they moved in with their father. This seems to benefit everyone. There is only one autistic child in each household. As my daughter has sensory-integration disorder which is on the low-end scale of the autistic spectrum, there are very few services available to her. She did so poorly in the public school system that I've had to homeschool her for the past 3 years and that's on top of me not recieving child support anymore. This has also caused problems with me finding work. Fortunately, I am now an office manager for a family-owned storage facility that not only allows my daughter to come to work with me but supports her and treats her like one of the family. I'm enrolled in school full-time and also a self-employeed sound technician/musician. It took until my daughter was 12 before I could re-enroll in school and feel comfortable with doing all I could to financially support ourselves without neglecting her needs. We have a supportive community of friends, and co-workers in the music/production industry are fortunately understanding. Yes, it is hard but it is well worth it to have put all that one-on-one effort into my daughter, even if it meant we had to sacrifice much during my children's early years. There are no programs in place to help single parents of autistic children. Since mine land on the High-functioning scale, the gov't doesn't recognize that they have disabilities and need constant care moreso than other children. I have never recieved a check from the gov't and it was all I could do to keep our foodstamps from being taken away because I was required to work 30 hours a week when the youngest turned 7. This isn't a matter of employers giving parents of autistic children extra money for working less hours, this is a matter of the gov't needing to help families of autistic children... especially single-parent families. I'm doing all I can now to support us independently, but I would've appreciated the help when my children were younger.

    March 20, 2012 at 10:43 | Report abuse | Reply
  23. nikki porter

    I have a 30 yr old son who has Aspergers Syndrome and seizure disorder. I am a single parent and have raised him on my own. HIs father refuses to believe there is anything wrong with him that a good "whoopin" wouldn't cure. He is on SSI and Medicade and has an IQ over 200. He is very smart but sits at home everyday trying to find new things to learn. I get no other services because he is "too functional" but he needs someone to be with him during his seizure times so my work suffers. I make good money for this area but it all goes to taking care of him. The adults with this type of autism are swept under the rug. They say to start getting help early but he was born in 1981 and there just wasn't the recognition there is now. I wonder what is going to happen to him when I am not around. It is sad to watch him sit there every day trying not to be a burden to me and going out of his mind with boredom. He is afraid to go to college or work because of the seizures. He desperately needs someone to understand and give him a chance. He could easily be a taxpaying citizen and just wants to have a life like everyone else. What does society think is going to happen to these adults when they get older? I assure you it is going to be an epidemic. Right now they are inside homes with someone caring for them if they are lucky. His father has enjoyed his life and done everything he ever dreamed to do...and just ignores the fact that his son is suffering. I don't receive any support from his dad since he turned 18...and believe me the costs didn't stop then. What a travesty.

    March 20, 2012 at 13:41 | Report abuse | Reply
    • Moni

      Have you looked into getting him a service dog? There are specially trained dogs that can sense when an individual is about to have a seizure: http://www.epilepsyfoundation.org/livingwithepilepsy/healthandwellness/Seizure-Dogs.cfm

      March 21, 2012 at 17:18 | Report abuse |
  24. rh

    I gave up a job making $75,000 per year because of my autistic son. Now I make around $50,000 per year. I'm sure women who make less see a similar percent decrease.

    It comes down to the fact that businesses don't want to employ women anyway, and a woman who has to leave to pick up a misbehaving child is not worth it. On the other hand, my friend is a director at a big pharma company, making $140,000 per year plus stock options, and she can come and go as she wants.

    It is only when you are starting out that you really pay the price. Once you've been with a company for a while, you have a higher chance of staying if family issues interfere.

    March 20, 2012 at 15:17 | Report abuse | Reply
  25. C0mm0nS3ns3

    Was a study really necessary to determine that if you have a child with special needs, you cannot work as much as if your child did not??? Now are we going to introduce legislation that requires parents with healthy children get paid less because they can work more, or that employers will have to pay part time workers who have children with disabilities a full time rate because they cannot work as much???

    March 21, 2012 at 12:49 | Report abuse | Reply
  26. PW

    I am a single mom of a child on the Spectrum. Would like to see something on single parents of autistic children. I have court ordered support but hardly receive it so I struggle everyday. I have a full time job, I deal with his school and daycare program everyday. He does receive services from the school. He is also involved with horseback riding and Tae Kwon Do that I pay for.

    March 21, 2012 at 13:52 | Report abuse | Reply
  27. Chuck

    I work in special education. Parent-teacher meetings tend to make me lean towards hereditary rather than environmental causes of autism, i.e. parents' income may be less because they are halfway autistic themselves. It is next to impossible to get false notions (e.g. 'vaccines cause autism') out of the parents' minds.
    I am not sure whether health insurance rather than schools should be funding treatments . . . but whoever is paying the bills ought to be able to limit treatments funded to those which have been shown to be work in peer-reviewed studies.
    Finally, having Asperger's myself, I think people on the margins have been hurt by all this 'the most important thing in life is just to get along with others' thinking. A lot of progress has come from people who may be on the autism spectrum (Bill Gates? Perhaps Steve Jobs?); a lot of our problems stem from going along–such as the real estate boom and bust.
    Being a bit rule-bound, as is typical, I was very mad when our county assessor raised the value of my home more than was allowed by state law without an inspection. But hey, try to get the government to go by the laws . . . .my assessment is $100,000 over what homes in my neighborhood ever sold for; sale prices in the county have dropped 36%; assessments haven't dropped at all.
    That's a bit of a digression, but the boy who cried out 'The Emperor has no clothes' probably was autistic. We should value people's gifts.

    March 21, 2012 at 14:18 | Report abuse | Reply
  28. Izzy

    Personally, I think the more urgent issue is the financial stability of autistics themselves. We can't depend on our families forever, and not all of us are suited for supported living or disability benefits. I have Asperger's Syndrome, and I qualify for neither; yet my executive functioning skills are moderately impaired, which makes certain independent living skills extremely difficult for me. Statistics also show that only a small percentage of autistics on the higher-functioning end of the spectrum are able to hold jobs. Autism is a burden for families, it's true; but what about those of us actually on the spectrum? Where are the stories on us?

    March 21, 2012 at 17:11 | Report abuse | Reply
  29. s.melvin

    HERE is a GOOD paying job for Stay at home moms.FORSTER CHILDREN .Fostercare pays $ 800. a months that should help some.

    March 22, 2012 at 12:22 | Report abuse | Reply
    • KJC

      First of all, where do you live that they pay $800 a month? Because that is not true in my county. In many counties, the amount you would be paid to care for a foster kid would be less than the regular cost of caring for the child, or else only very slightly exceed it. Furthermore, many foster children have TONS of appointments for their own diagnoses of post traumatic stress disorder and the like due to abuse or neglect. I am thinking that a family trying to care for one child with disabilities would be unlikely to financially benefit from taking on another child, not to mention that they would have trouble finding the time. Kudos to anyone who is able to do that out of love for children, but foster care is hardly a money-making scheme.

      March 22, 2012 at 17:10 | Report abuse |
  30. Felina Kostova

    I very much appreciated your article, “Autism’s burden reflected in family incomes.” As a pediatric resident, I am constantly impressed at the creativity, resolve and devotion that parents of developmentally delayed children, including those with autism, show. Although I agree with some of the comments that specialized services for children with autism are now widely available, it seems that obtaining these services remains challenging for families. Some families are forced to pay out of pocket to get sufficient therapies for their children as publicly funded programs often lack the resources to meet each child’s needs. This data suggests that along with a child with autism, families are faced with additional financial challenges. Whether causative or not, it further highlights just how important it is for all of us to continue supporting expansion and public funding for behavioral and other therapies that have been shown to make a real difference for children with autism.

    Felina Kostova, MD
    Philadelphia, PA

    March 22, 2012 at 22:27 | Report abuse | Reply
  31. Hal Austin ~ BEWARE!!

    Within the next few weeks my autistic son and I will most likely be homeless. I am a single mom, and my parents and brother are deceased, and my three older children attend Universities in three different states. We don't have any help where we live, and his father adamently refuses to help.
    I am sick to my stomach as I am unable to get any help to avoid the situation. The tears right now are flowing, my hands are shaking, so instead of completely explaining our situation I'll post a link to my blog. Now, I have blogged that a Senator is helping us, however, it still fell short of moving forward once it got back to the Florida Department of Revenue, Child Support Enforcement. I don't understand why they don't do anything productive in getting this man to pay.
    Autistic children don't do well with routine change, and my son is going to freak when we are put out on the street. There just isn't any help, and no, for some insane reason the state of Georgia does not allow him disability benefits. Really? I've tried, and I've tried, and I can no longer do this on my own. I'm sorry, but I've given it my all and I failed my son anyway. I pray one day he can forgive me.

    http://bewarehalaustin.wordpress.com/2012/03/03/deadbeat-dad/

    Kathleen Austin
    Woodstock, GA

    March 26, 2012 at 17:38 | Report abuse | Reply
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  35. GM

    As a single parent of a 15 yo autistic boy, and 2 other kids still at home, there are a few things I would like to point out in addition to the missing info for single parents...first and foremost, please google a statewide study done by University of Pennsylvania on the unmet needs of autistic kids and their families, as this is most likely representative of the US in general. 1. Community resources for autistic kids and families is extremely fragmented within society as a whole, and very difficult to obtain if you are not welfare eligible; also note that SSI should have a separate disability status, without funds, if they are going to have it primarily income eligible. These issues are further compounded if your child was diagnosed after age 3-5 for any reason. 2. There is a real shortage of providers who are adequately trained and educated in autism, which compounds issues such as medical stability, educational stability, ability of parent to work, and overall well being, not to mention other resources and other issues such as hospitalizations, etc. And there is a serious lack of understanding of the complexity of these kids medically on the part of medical personnel. 3. Many schools have inadequate provisions for ASD kids and/or an unwillingness to provide services; and in ny you can file a complaint with dept of Ed but if they agree the district was within their parameters you are fined from filing the complaint. Also, many school have IQ requirements, are residential or are an unreasonable distance for these kids to travel every day even if they were permitted alternative school. 4. Insurance companies are a joke, perpetuated by the medical community, And i have spent over 15 years in the medical field... The financial and mental health burdens on caregivers and other family members is tremendous. And there are very limited community supports to address this.... I personally don't know of any in my area and i have contacted all the autistic schools to inquire. The gentleman that stated it is like running your own business is absolutely correct, it is, a direct care business where you handle it all. The demands are unparalleled. And I usually feel like I am the only one who really knows what is going on with my child, tying all of his providers together, as creating a team among them is also a huge challenge. I average 15-20 appts for this kid a month, and that does not include the every day struggles, or the needs of the other children, which is also a balancing act. The goal is to enable each person as productive as possible. Why is it welfare recipients, in general, get more assistance than our disabled kids? I'm thoroughly fed up with being treated like a second class citizen when it comes to resources that are handed to routinely to people who cheat the system; claim they are disabled and get medicare/ssi because they had back surgery but still hold a job off the books, those who get section 8 for 15-20 years and don't claim their real income, those on welfare that still get a federal and state refund... While I have always worked, paid my own way, cared for my own kids, and even adopted one from foster care, and am literally $2/month over from my kids getting reduced lunch, or my autistic son getting SSI disability status because I don't qualify for welfare (I believe here it is more than $14k a yr), or unable to get services because community resources have been privatized and are now only accepting Medicaid (because govt money is the biggest and least accountable business to be in), and the school system saying all my sons problems are at home even though they did his psychoeducational testing themselves and found him way behind his peers in cognitive functioning. I'm fed up! And these problems need to be addressed. Autism is not slowing down. And for the special education worker- are you for real? The parents are half autistic? Do your friggin research buddy.... You just displayed your own IQ.

    September 29, 2012 at 22:34 | Report abuse | Reply
  36. GM

    I apologize, I was upset and hit the post button before I could delete my inappropriate statement. I should not have insulted anyone for their opinion, even if I felt insulted by their comment. I would have retyped the entire post less my insult but this site would not let me delete the previous post. So I apologize to the special education worker, though I hope you see why your comment upset me.

    September 29, 2012 at 22:51 | Report abuse | Reply
  37. Kristi

    Hi, my son has a speech and language delay but doesn't have an official autism diagnosis. In fact, a developmental pediatrician told us she thinks he's not autistic. And yet, a delay is a delay. I have chosen to not go back to work full time so that I can shuttle him to his PAC class, to speech therapy and work with him using ABA at home. It does affect income. We are very lucky to be in a county where my son gets services. I know many are not. I think there should be more done to federally regulate services and funding so that EVERY CHILD who needs early intervention gets it – free of charge, as part of the No Child Left Behind Act. And they're not all getting services. It's awful.
    I share some of our experiences here, if you're interested: http://www.findingninee.com

    October 25, 2012 at 11:18 | Report abuse | Reply
  38. Candice

    I wanted to initially communicate with the Aunt who posted on March 20, 2012 at 11:50 however I will extend to all who are in need. For those of you who are receptive to sign language and understand that it not only creates communication but it facilitates speech development, I will be happy to help you via email to understand the simplicity of what you need, what you don't need, types of resources you will find, and how to create a step by step, week by week plan that will change your life. Unfortunately signing gets a bad rap. It’s scary not knowing where to go or who to get advice from. I am more than happy to provide and share what I know about creating a plan for your family to include ways for everyone to be a part of the plan. We want everyone in your child’s life to get on board. Anyone can email with questions or whatever you need. You just need to know how to create your first words list, what signs to use, how many signs do you need, where do you get those from. I can help make your day to day easier, I promise. Yes I have a company but I would love to be able to help those on this forum who have children on the spectrum and are open to ASL. It won’t take long for you to see the results and you will never look back. It does not delay speech. It helps to facilitate quicker speech development. I can explain this. Every single roadblock, issue, obstacle, or concern you have can be answered. I promise. Children just want to communicate. Just email me. My help is free. candice@signingautisticlives.com

    October 27, 2012 at 23:08 | Report abuse | Reply
  39. Rosie

    Most parents can't even leave the home when their autistic child gets older, stronger and requires more 1:1 care. When they do, they risk having to leave their children with in home respite workers. And every parent's worst nightmare is having to trust caregivers with their autistic child. A case in California reminds us you can't always trust caregivers. Two men were caught eye gouging, hair pulling, punching and kicking an autistic young adult and are not awaiting trial. Parent's work so hard and need relief and respite. If they can't trust the very respite workers provided by agencies and state funded programs, how will they ever have a life? What can we do to stop this epidemic abuse of special needs children and adults at the hands of caregivers who are doing clandestine abuse? http://www.youtube.com/watch?v=ybiFEVTzGBU

    February 3, 2013 at 18:12 | Report abuse | Reply
  40. Rosie

    Excuse my english, they ARE awaiting trial.

    February 3, 2013 at 18:12 | Report abuse | Reply
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  42. Ron C

    I,ve been a single dad for 15yrs. to my now 20yr. old autistic son (add/pdd/ behav.probs.) .I am finding that now with autism being at the systems for front , there are little if any resources available for a son like mine . He as they say , is so far along with the spectrum that there are not many worthy places or resources for my son to go and try learning the basics. He attended a special school nearby for 10 yrs. and learned little of any use. Now with puberty in full force its even more diff. I home school him ,and he gets it bit by bit , but there must be more out there. ANYONE HAVE IDEA,S? pls. let me know . thanks god bless .

    April 18, 2014 at 16:09 | Report abuse | Reply

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Get a behind-the-scenes look at the latest stories from CNN Chief Medical Correspondent, Dr. Sanjay Gupta, Senior Medical Correspondent Elizabeth Cohen and the CNN Medical Unit producers. They'll share news and views on health and medical trends - info that will help you take better care of yourself and the people you love.