Mothers Of Children With Autism Earn 56 Percent Less

It has long been known that parents of children with autism face particular financial strains, but researchers have now taken a first stab at quantifying the exact toll it can take on their income.

The study, published Monday in the journal Pediatrics, finds that families of children with an autism spectrum disorder earn 28 percent less than families whose children have no health problems, and 21 percent less than parents of kids with other health limitations.

And mothers' earnings are even harder hit.

Women whose children have an autism spectrum disorder make 56 percent less than moms whose children have no health problems, and 35 percent less than those whose kids have other health issues. They tend to leave the work force altogether, or take lower paying jobs and work fewer hours.

"A lot of times, research is to tell us what we already know. If you say this to any mother of a child with autism, they know this is happening," said David Mandell, a researcher for the study at the Center for Mental Health Policy and Services Research at the University of Pennsylvania. "I don't think this is any kind of news for those families."

Perhaps not. But according to the study's authors, it is among the first studies to go beyond the system-level costs of autism and focus on the burden that can accompany changes in parental employment.

To do so, researchers relied on the 2002-2008 Medical Expenditure Panel Survey, which tracks cost and utilization of health services in the U.S. They compared data from parents of children with an autism spectrum disorder to parents of children with another health limitation, as well as parents of children without.

Overall, mothers of children with autism were 6 percent less likely to be employed than mothers of kids with no health problems, and worked an average of seven fewer hours per week.

The existence of a wage gap between working women with and without children has been well-established, with estimates ranging from two to nearly 14 percent lower wages for those with children. In a recent interview with NPR, economist Kate Krause, who has researched the issue extensively, said that could stem from a variety of factors, including women taking lower paying jobs that allow them more time with their children or getting less education because they anticipate staying home.

But the new study emphasizes the particular toll that parenting a child with autism can take on women's earning potential.

"What this study shows is that the mother is the one that often times has to cut back significantly, or even completely to care for a child with autism," said Peter Bell, executive vice president for programs and services at Autism Speaks, one of the nation's largest autism advocacy organizations.

"They end up having to coordinate support form various services," Bell continued, explaining that his organization has pushed for insurance reform efforts at the state and federal level to provide broader coverage for autism therapies. "The children might have to attend a lot of different therapy sessions -- oftentimes they're in the home, or they have to go to speech or language sessions. It really becomes a full-time job."

Mandell told The Huffington Post that he had hypothesized that the research might uncover some kind of compensation on the part of fathers, who would chose or be forced to work harder, longer hours and perhaps earn more money, but that was not the case. The research uncovered no significant differences in paternal earnings among the three groups.

Overall, families of children with no health limitations earned nearly $18,000 more per year than families of children with autism.

"People talk a lot about the cost of treating autism, and they're mostly talking about the healthcare and educational costs," Mandell said. "What this study gets at is 'What's the cost of not treating autism?' 'What does it cost families?' That is what this shows."

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Comments

[The Ghost of Awesome]

06:57 AM on 06/15/2012

Oh look everyone...

http://upload.wikimedia.org/wikipedia/commons/1/12/EnthanasiePropaganda.jpg

It's the same thing but with a personal spin! Let's see how many parents try to tell me money issues about autistics and this aren't the same thing. There are enough who want to turn their kids in to stepford children, or abort them...

[BSDebunker]

06:23 AM on 03/27/2012

The thing that irks me about this article (and so many like it), is that it is slanted for moms. In my family, it was me (the father) that gave up his career, dreams, income, nights and weekends out and all the rest to be with my son. My wife has some semblance of normality as she gets to leave everyday for the office, while I never interact with anyone outside of the special needs circle. I know this probably sounds more like a complaint than it is meant to, but I just want some love for the dads of the world who dedicate their lives to their children with autism for a change. It seems like it is always assumed that only the moms ever get involved or feel the pain.

[Isabel O]

08:48 PM on 03/21/2012

You're all missing a big piece of this picture, and it's this: autism doesn't just affect families of autistics. It affects people like me, who actually ARE autistic. And there is nothing wrong with embracing this label. However, social stigma, as well as difficulty navigating the way society is set up, make independent living extremely difficult for those of us on the spectrum, even if we are high-functioning. I have Asperger's, the "mildest" form of autism; and yet, the majority of my community is unemployed, homeless, or living at home. We're living without help or acknowledgement, while the rest of the world coddles our families and tries to find a "cure". We don't need a cure; we need understanding and opportunities to flourish.

[BSDebunker]

06:13 AM on 03/27/2012

Maybe you don't need a cure, but my son sure does. He is farther along the spectrum than you, I suppose. He can't speak nor perform basic functions. When my wife and I pass, I can't help but feel that my son will end up living a life of institutionalization - something I am abhorrent to. If there was a cure, or even better, a known cause that could then be avoided, I would trade everything for it - all my money, all my possessions, even my life.

[The Ghost of Awesome]

06:51 AM on 06/15/2012

Your son sure does? Then why the hell do people call all these things autism then? Well?

[Isabel O]

06:27 PM on 03/27/2012

I'm not talking about whether or not a cure is necessary. I'm saying that there needs to be more attention paid to the people who have to live with the condition. How can society accommodate us? How can neurotypicals help us reach a stage of relative independence--or, at the very least, help us feel like we are contributing to the world, and not just freeloading? And trust me, I am NOT minimizing your struggles. I know that you are in a particularly difficult role as a caregiver. But I am actually autistic, and even though I can communicate, even though I can perform several necessary functions in daily life, I still get overwhelmed by more than one task at a time. It's things like this that scare me; the fact that I have very real and significant disabilities, and that society doesn't provide much in the way of support when I leave home. I am very scared by the idea of a group home, and yet it seems like a very real possibility at this point, for myself and many others like me. And it's not fair. It's not right.

[StuckAtHomeMom]

11:59 AM on 03/20/2012

The article missed one HUGE problem - daycare. There are no daycares suitable for my child. I can’t just put her in any old daycare like most parents - she acts like she’s 2, but with the abilities of a 4 year old, she puts everything in her mouth, doesn’t understand language and can’t communicate. In her special preschool she has 1 on 1 care, but that’s 6 hours a day - there are school holidays, summer vacations, before and after school care that she will need. Daycares don’t provide that kind of care.

[ChrissyDC]

02:25 PM on 03/20/2012

Even for higher fun tipping kids cold care is a problem. After school care at their school is minimally supervised, as is the town's recreational summer camp. Too unstructured for his needs. But he doesn't qualify for and doesn't require special needs camps.

[ChrissyDC]

03:58 PM on 03/20/2012

Damn I can't spell, sorry. 'For higher functioning kids child care is a problem' it should say...

[sharonlmomofthree]

01:03 PM on 04/25/2012

I have a 15 year old son with autism and I was able to enroll him in the Easter Seals Daycare for special needs children. The program was so good that mothers with children who didn't have disabilities started enrolling their children also, which was good for my son. He was exposed to "regular" kids as well as kids with autism, down syndrome, etc.

See if there is any such program where you live. Try to see if there is a Goodwill/Easter Seals where you live and see if you can find other parents in the same boat and see what they did. Hopefully you can uncover something.

This is one of those times I wish I lived where you did, I would happily go to your home and stay with your daughter. There isn't anything regarding autism I can't handle. Best wishes in your search.

[Jessica Espo]

09:06 AM on 03/20/2012

The diagnosis maybe inappropriate for those out there manipulating the system, but for a lot of us we would love nothing more than to remove that label from a description of our children. What the system doesn't understand is, we want our kids to have the least restrictive lifestyle possible, just as they do, as parents we should be respected in knowing just what it will take to achieve that. We are rehabilitating not just a child, but the whole family. Think how much more we can contribute to society if helped properly, if some guidelines that actually work with the family were in place rather than deterents that make you feel like a criminal anytime you ask for help.

[Jessica Espo]

09:05 AM on 03/20/2012

of course, they get evaluated & thrown into special education, but no one will tell you what you can & should be doing at home to support their services. Not for free anyway. You have to take it upon yourself, to do research, go to support meetings, find out what other parents are trying, read everything published on autism, try different therapies which are expensive & usually time consuming. After doing all that, think about getting up and going to a job that you are under appreciated and under paid, to do meaningless work. Now I'm not saying the rest of the population should support my decisions in life financially, or mentally, but don't pretend to help the cause when your only adding strain by not doing either.

[Crimson Wife]

08:42 AM on 03/31/2012

Navigating all the health insurance, school district special ed, and Regional Center bureaucracy associated with my DD's autism is extremely time-consuming. I have probably spent 10-15 hours per week on in for the past 6 months.

[Jessica Espo]

09:05 AM on 03/20/2012

You know it's so easy to look from the outside and think you have all the answers, my son is 10 and lives with non verbal autism. I watch him struggle and endure frustration as he tries to verbalize what he wants everyday. When he was 2 he was diagnosed, I was working full time 40+ hours a week. I tried cutting back, I tried getting less demanding jobs, but staying on my collegiate carrer path & raising a child w/ Autism just wasn't working. Maybe if I had been further down my career path things would have been easier, but that was not the case. I realized the severity of my child's needs, & realized, that his best advocate was me. I needed to dedicate my energy, time, & heart to helping him. When I stopped working, I had more energy to be patient w/ him, go at his pace, more time to make schedules around him. When you are working full time all you want to do when you get home is kick off your shoes and go to sleep. I was too depleated to work on his speech or teach him about safety and self awareness. Most children pick these concepts up quickly. Imagine what it's like to teach a child who has no comprehension of pain or consequence, to not run in a busy street or the concept of a stranger. It didn't help matters that i received no information on what to do next.

[Christina Belcher]

08:59 AM on 03/20/2012

i think in general this country is very unsupportive of families. and throwing in any disability or illness makes you more vulnerable. there are no family leave laws in most places. many people work at jobs that have no fringe benefits. i am always amazed how people handle difficult situations in the us.

and then throw in the fact that healthcare is marginal, and often employers don't provide it. i know a mom who has two boys with autism, and the stress her family lives under is simply incredibly. i wish that those that proclaim to be for family values really would follow through with deeds. they simply use the term as political pawn, nothing more.

[Stuart Hamilton]

05:39 AM on 03/20/2012

It is well documented children will internalize the labels they are given. I have witnessed a perfectly normal boy transform into an autistic child because of a diagnosis, and he is now genuinely autistic. He exhibited no signs of it until he was told: "You're autistic", and put in a room with other autistic children. His is obviously a learned behavior, but we're told on TV and over the internet, "They caught it just in time."

I have seen some very severely autistic individuals, and these people cannot function on their own. What bothers me is this drive to expand the classification to include what would otherwise be perfectly normal childhood behavior. The research into this is all nebulous and obfuscated, and it really boils down to classification.

Of course, expanded classification means more diagnoses, and more diagnoses leads to an artificial epidemic. When a disease is based solely on diagnosis, with very little quantifiable evidence, there is a problem with the classification. Something must be done to clarify ASD, so that qualifying for services means actually having a child with a clearly identifiable disorder, not a shopped diagnosis.

[MIMom]

03:07 PM on 03/21/2012

I can tell you from experience that I fought that label like heck for years before my oldest was "officially" diagnosed. She didn't internalize anything. She was "speech impaired" from 18 months until age 5 (which she was, she still has challenges processing speech).

I found it very hard to find resources for a HFA (high functioning autistic) child. Anything that helped with her ASD was filled with kids more severe than her, with behaviors that I didn't want her to model, and "neuro-typical" kids wanted nothing to do with her.

[Crimson Wife]

08:49 AM on 03/31/2012

It always boggles my mind when outsiders claim that it is easy to get an autism diagnosis. It took multiple appointments with the developmental pediatrician, pediatric neurologist, school district psychologist, and Regional Center psychologist plus stacks of paperwork filled out by me, my child's Early Intervention preschool teacher, the EI preschool coordinator, and our general pediatrician to get the autism diagnoses . Diagnoses plural because our health insurance, the school district, and the Regional Center all insisted on their own evaluation before providing services.

[whdove88]

11:38 AM on 04/21/2012

I so agree! Sometimes it takes years of going to Dr to Dr to find a diagnosis and no one wants to give a diagnosis of Autism - it is not taken lightly since it is a life long disorder. And what about those who dont live in Calif - out of state who have NO access. Our young Dr here in TX took on my son as a patient but said she was not taught much in schools on this at all. My son was diagnosed in 1948 and its now 2012 . All these years have passed and all the confusions in diagnosis is still happening, even worse. Im glad my kid & I are not going thru all the baloney that parents are dealing with now in schools. If your single it does reduce your income . You have to take off work alot for meetings , I ended up taking lower paying jobs to have that advantage - many employees didnt want to deal with me having to leave work early. My son is on a program where I get paid for community service - do you think that pays much? I gave up my career so he could be home and not in an institution - I lost income for sure.no raise in 7 years. His dad died in 1984. There has been no other man who has wanted to commit to what I have. Only me to fall back on - I worry constantly

[Stuart Hamilton]

05:20 AM on 03/20/2012

I don't mean to sound insensitive, but TIME did a very good article on autism, and much evidence points to it being an epidemic of diagnosis as opposed to a genuine problem.

The classification of autism has expanded, and advocacy groups are fighting for further inflation of the disorder, and are fighting tooth and nail the APA's attempt to more concisely and accurately quantify autism in the DSM.

To me this sounds like a very spurious correlation, and I find it very difficult to believe that autism reduces overall income. Certainly, it may place increased strain on finances, but I find it very, very hard to believe that having an autistic child automatically means you're going to have a reduced income.

Certainly, some mothers find it necessary to quit work to take care of their autistic children, but considering the absurdly wide range of the autism spectrum I can't help but wonder if it is a reduced income which convinces parents to seek an autism diagnosis, as opposed to the autism diagnosis causing a reduced income.

The services at stake over an autism diagnosis are quite hefty. We have family friends who have autistic children who frankly act perfectly normal. Are they really autistic? The nebulous criteria currently in the DSM gives me pause.

[cindyrmac]

08:09 AM on 03/20/2012

Yeah, we're all faking it. You're speculating and using a couple of personal examples to make some very broad assumptions. If you want to speak about the experiences in other people's lives, give it a little more research before you arrive at any conclusions.

As someone who's living it, I can tell you that you have no idea what you're talking about and your position is extremely offensive.

[ohplease]

08:29 PM on 03/21/2012

Thank you Cindy. Now I don't have take the time to formulate a cogent response to the above tread,which is an excellent term to use as the whole argument is hanging by one. After 18 years of raising a child very low on the spectrum it is nice to know I am a male welfare queen

[EmptyTippy]

08:53 AM on 03/20/2012

Ah someone who know nothing at all about what they talk about but has the answers anyway. Try leaving you responses to subjects you have intimate knowledge about. This is a very true statement and I know because I've lived it for 12+ years now & many ( the majority I've know & I've known dozens more than you ever will & will interact wilt more than you will on a daily basis) other parents that I know, face this issue. SMH, stop being a naysayer for no reason.

[My Siblng My Pal Dolls]

11:01 PM on 03/19/2012

My son is almost 26 years old, and my experience with working full time has been very stressful. I have to have a job that's very flexible, family - friendly and close by, otherwise I would not be able to do it. I started my own business - My Sibling and My Pal dolls - so that people could begin to understand, from a young age, about what life is like when you have a loved one with autism living with you.

[ChrissyDC]

10:24 PM on 03/19/2012

It's nice to read some of these comments from parents because it makes me feel less alone. My son is on the higher functioning end of the spectrum but still needs much support, making it nearly impossible to work full time. Thankfully I have a flexible and wonderful part-time job. Still some months it's just not enough money.

[Bluedove16]

09:35 AM on 03/20/2012

I agree with you. My son is also on the higher functioning end of the spectrum, but just as you say, he needs a lot of support. I'm still new in all of this labeling, but it has helped us as a family with more understanding, and with the neighbors. My daughter has tourettes so we were already experiencing the "looks" in our new town. I don't work anymore outside the home, the only 'income' that I will bring in is from what I will sell from the garden this year, and all of that income is already slotted for education. The trade off of my income and my children is well worth it, but it is hard and there is no way I could do this as a single mother. For those that do, I applaud you.

[SithRose]

01:43 PM on 03/20/2012

Some days, it feels harder because they aren't as "obviously autistic". Only one of mine displays much of the classic autistic stimming behaviors - The other only stims when he's not on his ADHD medication. To the passer-by, they look like ill-behaved undisciplined kids running wild at the hands of parents too overwhelmed to properly discipline them. They don't realize that walking into Walmart or Target is visually and auditorily overwhelming, driving them to try to distract themselves from the sensory overstimulation by motion and their own sounds.

They don't realize that we deal with this EVERY SINGLE TIME we walk into a supermarket or restaurant. They don't realize that I'm holding my 6 year old tightly not to restrain him, but to comfort and reassure him. They don't realize that the slightly raised, firm voices are not because we're being harsh, but because we're trying to be heard above an overwhelming cacophony of sound.

[imadesphousewife]

02:22 PM on 03/19/2012

Yeah, no kidding. I left the workforce 8 years ago to care for my severely autistic child full time, and people wonder why I don't work a "real job". I'd trade places with any mom who works full time and has normal kids, in a heartbeat.

[Jennie K DillerDaniels]

05:39 AM on 03/20/2012

Full time sahm is a real job-those jerk wads! I'm not completely sahm anymore since I go to school now, but my husband still throws @ me every once in awhile that at least he.works. I tell him that taking care of our children, keeping appointments straight, and cooking isn't work? He usually shuts up after that.

[Jessica Espo]

09:30 AM on 03/20/2012

They don't realize just how much work we do, besides the normal SAHM chores, cooking cleaning etc, we are grooming, feeding, driving, speech and OT therapist as well, I forget to brush my teeth somedays Bc I swear I did it already, when in fact it's just that I've brushed my sons teeth twice already!

[Forever Jung]

12:14 PM on 03/19/2012

There seem to be many correlative studies on the subject of Autism. Has anyone seen one on the correlation between fatherless households and the diagnosis of ASD?

[frank day]

05:12 PM on 03/19/2012

I've seen several that show people interested in pop psych have below normal intelligence.

[mathme]

02:10 PM on 03/21/2012

That's not pop psych. It's a real correlation that exists not only among children with autism but all children with mental disabilities. There are studies on this published in peer-reviewed, academic journals, not popular media.

I don't think (at least I don't assume) that Forever Jung was saying that it's a causal relationship, it seems more likely (this is just my interpretation) that the additional stress leads marriages to dissolve and that children of divorced parents often end up living with their mothers primarily. Whatever the reason for the correlation, the correlation is there. There are a lot of correlations and there's always going to be someone who is going to be making causal claims about them.

[Jennie K DillerDaniels]

05:36 AM on 03/20/2012

Then you get the genetic test results and you see it's not because of a fatherless household. Asd kids have more synapses going on in the front of their brain than us NT people.

[passingthru]

11:56 AM on 03/19/2012

this why Reiki should be advocated vigorously , my opinion and experience but to each their own prejudices and fears