No-brainer: families with autism end up with lower incomes

The results of a study in this month’s Pediatrics journal will come as no surprise to those of you raising children with autism. The study surveyed the parents of 11,684 school-aged children with autism. It found that on average a household with a child with autism makes $6,200 per year less than an average family where the parents have similar careers. If you like to think in percentages, let me put it this way: parents of children with autism earn 14% less than parents of children without autism.

This seems like a no-brainer to me. Our son has significant physical and mental disabilities. Gus is 21 years old now and lives in a group home. While we were raising Gus at home, my husband and I often stayed in jobs and locations for less pay due to Gus’ needs. And it wasn’t exactly easy finding day care for Gus while we worked. Depending on how Gus was faring, we would cut back work hours, give up fulltime jobs and sometimes stop working altogether to care for him.

I’m not complaining. We love Gus, and we miss having him at home. I’m just trying to explain why the results of this study seemed so painfully obvious to me.

Childhood autism is associated with a substantial loss of annual household income. This likely places a significant burden on families in the
face of additional out-of-pocket expenditures.

Like I said — a no-brainer.


 

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  1. Beth Finke Says:

    Oh, Lynn, your daughters are so fortunate to have you as a mother. You are so right: it is a balancing act, and so often feels like there’s no net underneath.


  2. Lynn Says:

    Been reading so many of the post and I can so relate. I am the single mom of a 12 yrs autistic daughter. I walked away from my 20 year marriage because my ex husband was NO HELP at all and just added to my already great task of caring for a special needs child. I has to quit my job several years ago to care for my daughter. Thank GOD, he has recently blessed me with a job and a wonderful understanding supervisor who has been nothing but supportive of all the schedule changes and challenges that come along with parenting an autistic child. Everyone talks about taking care of yourself as a caregiver but honestly, the cost for care is so much more than I can afford, especially since it is a struggle to keep the rent paid and food on the table. My insurance does not cover any of her therapy services which is crazy to me. My other daughter helps me alot with her sister by watching her in the afternoon after school and I am usually on pins and needles hoping that all goes well until I get home from work. It is like walking the tightrope of life without a balancing pole or net below you! Hold on parents I believe that GOD knows and sees our situation and will give us the grace to handle these special children. He must trust us alot to send us his most special and precious gifts.


  3. maria Says:

    my son is 4 yrs old and i can not take care of him… Is there a group home or something i can place him where he will be watched 24 hrs? :(


  4. CreZetta Stokes Says:

    First of all let me say that I understand all to well. I had brain surgery and 2 strokes (January 28, 2006) and I know that I am a living miracle (Psalm 118:17). My daughter was finally diagnosed with Autism March 2008. The reason I say finally is that I was frustrated with not knowing and I had done some research and thought see was Austistic but the doctors just ran test after test. When I came to Augusta, she was diagnosed. It has been a rather challenging not knowing from day to day. By being a past teacher of children with disabilities it has help me. I know that if I wasn’t disabled and everything was “normal” I believe that I would have to quit my job.
    I am 40 years old and I had to move back with parents. Not quite my plans to be back home and raising a 2 year old with Autism. We stay in my sister’s old room which is not big! We out grew it before we got here. It expensive raising a child and an autistic child. I’m just glad that there is a blog like this that I can vent and seek guidance. The joy of Lord is my strength! I would like to encourage each of you to “Command your morning/day”!


  5. Patricia Wright Says:

    The response to this blog has been humbling. As a professional working in autism service delivery I am well aware of the ADDITIONAL expenses families incur when they have a child with autism. Therapies are expensive, specialized childcare may be necessary, adaptive equipment is costly – the list of additional expenses can grow quickly.

    The data that families with autism have fewer funds from which to draw for these expenses adds to the challenge of caring for a child with autism. State departments of education and health are tasked with providing appropriate care for individuals with disabilities but with the prevalence of autism continuing to increase these systems are increasingly challenged.

    Family support groups have been mentioned many times on the blog. Families within certain geographic regions are often the most knowledgeable about any and all financial support that is available. Parents who have been through the process can provide information for other parents.

    Autism Cares http://www.autismcares.org/ has stepped-up to support families. This organization had made-it their mission to support individuals with autism and their families during natural disasters and other catastrophic life events. The support is modest but clearly this group is attempting to address the needs so eloquently portrayed by the number of respondents to this blog.


  6. Michelle Harper Says:

    I just found out today that we get only $600 instead of $1200 in the economy stimulus packet for the “married part”….why? Because I am a stay at home mom and log no income. Because of this we LOST $600. I am not begrudging anyone who gets it, we all can use it. But, I homeschool, the state does not pay for my kids to be taught. I keep my 5 year old with autism home, the state/government is not paying for any services, we are doing them all ourselves. (And our 13 year old is home schooled and 15 month old is not in daycare) And I am a caregiver for my 72 year old stroke victim father who otherwise the state would be paying for in nursing care………and guess what…..I didn’t make enough his year to qualify. I could have really really used that $ to pay for B-12 and such things. And some music therapy things as we are working on that now, and reading.
    Very sad tonight that the government thinks my day is worth nothing. NOT TO MENTION I AM GIVING UP EARNING S.S. FOR MY SELF.


  7. debra Says:

    I understand what everyone has said, I’m living this status also with one of my twins being diagnosed with autism. Being a single mom with twins is difficult enough and with the diagnosis it makes it a bit more difficult especially with little or no money. It has been nothing but the GRACE OF GOD that has kept us. I’ve researched every program conceiveable and there are not many available. There should be some type of financial assistance program for parents of disabled children and families with disabilities to not just help with therapies..but with food,utility, daily needs since our incomes are so limited. My hope has been in GOD.My church, and 2 other churchs, my womens group have collected monies, clothes, given cards for food, kids clothes, gas cards, rides, transportation,money and…etc and prayerfully I can go back to work parttime when school starts once the school know where to place my son since they (my zone school)do not have a program set up for autism… and at this time I do not qualify for the makay grant for special needs child ..my twins are just entering Kindergarten…Help suggestions- church-even if it is not your church, chrisitan sharing in my area will give food-help with bills…and you do not have to qualify-just be in that county-seminole-catholic charities, jewish center, all these do not per say qualify you–community assistance will have you complete an application… LET’S CONTINUE TO PRAY AND JOIN TOGETHER ON THE FIGHT FOR OUR LOVED ONES, OUR LIVES AND call on “Our God who will supply all of our needs according to His riches in HEAVEN”, pray and believe this daily in Jesus name & God will send the help to us…thru others.


  8. Beth Finke Says:

    Hello from the blog moderator – a reader named Kim left a comment about this but I think she mistakenly left it on another post. To read Kim’s comment, please go to
    http://autismblog.easterseals.com/?p=250#comment-4740
    You’ll see there that she and her husband made a HUGE decision after being disappointed with the autism services their child was receiving. They moved to a different state.


  9. Angie De Blasio Says:

    My heart goes out to all. I am a grandmother of a child with Autism. My daughter is a single mom with little or no help financially or otherwise from the father. The school and the medical profession refuse to help her. I am worry about her – she is always depressed. Up to now she has taken jobs that are part time and give her fexibility, because we are there to help her, but we are getting old and must prepare for our retirement – I am 74 and know we cannot keep this up too much longer. If anyone knows how she can get help for her son please advise us. thanks and God Bless all.


  10. Natalie Totire Says:

    I have a Bachelor’s Degree and no children, and I question if I ever will get married and have children. I have been diagnosed as “on the spectrum” but not to a full degree for the diagnosis of Asperger’s Syndrome. I never imagined that after college I would spend year after year trying to find the right job I will fit in and only to struggle financially. I used to work in child care, according to my education, but my disabilities prevented me from living up to the demands, so I had to quit. So much for the term “Well, find a ‘day job’ and do your art at the side!!” Then if I ever do and last for any time, a miserable voice screems out, “This seems awkward! I’m not good at this. I’m an artist.” I went back to school and plunged in getting better with art and trying to survive on computer skills and art since then. I know the economy is partly to blame, and I am quite tired of trying to pay bills every month. People tell me I have a lot of good talent (with art and design), and have the potential for a good, well-paid job. What scares me on the other hand is running into my weaknesses. I tend to only think of one thing at a time, and I get confused so often. I thought this was normal after I just graduated high school to not know where to turn, but this seems to go on continually. It is so frustrating! But I try not to think so much about myself. Often I question the cause when I see my friends suffer. I also pray that things in our country get better and hang onto my faith, although many times it is so difficult. I get angry with my situation and the situation of others, but it is hard when I don’t know where to target it. Maybe I should be angry with the IRS because they taxed everything I was able to save from the “self employed” job I have. What? I am far from rich. Maybe I should tell the President and politicians to focus on improving our economy and get more and better jobs for everyone in the country instead of the war and so many international affairs. I am a citizen with a degree and should get better care as one.


  11. Robin Says:

    The article is absolutely true. My husband and I have three children. Our middle child has autism. He will be turning seven this summer. I too had to quit my job and stay home. I could not find specialized day care for my son. Affordable is a joke. Acquiring respite car, that in itself is another hurdle. It seems that Regional Center has contracts with all the companies that provide respite care. So, if you do not go thru the Regional center, you can’t get any help. I have tried. Denied three times. As one single parent told me. Said she knows other clients of Regional Center. The only help single parents. So, those of you that find yourself in this situation. Please be encouraged and get all the assistance you can.

    Few weeks later, I spoke with a representative from a resource centers. Since I could not get assistance with Regional Center, then my only other option was County services. They would provide services/ respite care…only if your child was in some kind of danger. Infact, I was told to have my doctor write a note to County Social services, state my child was in danger of abused and that he could benefit from respite care. Based on that information, County would be more inclined to appoint respite care. Okay,..I am thinking about what the representative is telling me. Basically have our family practicioner lied and state the at my husband and I are abusive parents. Not only is our disable child in abusive/neglectful situation, but it is resaonable to assume that the other two children would problably be suffering as well. Oh my gosh! We would probaly be thrown in jail. Reputations ruined. My husband would loose his job. We would loose our next…you get the picture. Go through all of that just so I could get respite care to become available to work outside the home and financially contribute to our families income. I kid you not. These people are nuts. That is what the representative a amily resource center advised. Obviously, its a no brainer!. We’re just going to remain dirt poor for rest of our lives.

    Dorothy was right, it really is frustrating when your government/ President doesn’t care about working families that clearly need help. Wasn’t it President Bush Senior who said, Pull yourselves up by your own boot straps! I think its fair to say that most Americans are trying to do just that. Reasonably asking for a way to provide our disabled children a proper education /treatment to help them reach their full potential is not aterrible thing. I think tax payers should have that expectation. No. What happened? You give, we give and we all got a stimulus payment. It goes directly into our gas tanks, rent, energy & utility bills and food. I dream of a vacation I might take, if only for three days. So much for stimulating the economy.

    Unfortuantely, the stimulus payment did not afford any disablity treatments and educational supplys to help my son with his autisim. Although, if I could work outside the home and provided with some respite/ daycare. I am sure I could have.

    Saw the news early this morning. The new casters talked about the comments of Barrack Obama. ” Folks clinging to their guns and religion.” Well, I think about all the wild and crazy things that have going on lately. People are looosing their homes, jobs, high food prices, high gas prices, both big and small business are closing. Literally overnight in some places. Stealing gas is a big deal. People are becoming desparate. Extremely ruthless, becuase they are unable to get by on bare essentials. Innocent people are becoming victims of theft, assault and or murder are a resullt. God forbid if you happen to stumble upon the events in progress. It’s sad, terrible and most of frightening. Society is beginning to fall apart. Things are bad everywhere, not just in so called “rough and tough neighborhoods.” Obama said, Clinging on to my guns. Yeah, I am starting to get a little nervous about my families safety. Feeling trapped because I can’t do anything about our situation. I can’t move, can’t work outside the home, can’t afford gas, food, treatments, daycare, educational materials for my disabled child or thing for my other children. Last but not the least. i do not have money to put in the plate at church. No, I am not going to go out and join the ranks of crazy insane people and participate in the demise of humianity. Why, because amd cling onto my religion. It is what keeps me going when things seems so impossible, unfair or unbearable. I pray that things in this country get better. In fact, I hope things get better around the world. I hope our troops come home soon. I hope they get the medical, mental and financial support they will need to get back on their feet. A lot of them will be returning home as disabled Veterans. It bothers me that we won’t be able to take care of them. They deserve respect and to be treated with dignity. Just like our children they need to have access to treatment, education and financial support. Of course, we all know that being disabled in this country definitely has it challenges. I encourage everyone not give up! Because, nothing we ever really want is going to be easy.


  12. Lola Morris Harris Says:

    I am in the same boat. My son is 16 and we just found out last summer. He’s been diagnosed with just about everything. How do you keep from crying? I have taken every antidepressent known to man and I guess watching my son go through the confusion of puberty over powers the pills! I love him so much and have not had much help from his dad. He doesnt even get state aid or insurance. I have another son to! All I can do is lift my hands for strength!


  13. Dorothy Says:

    Hello,
    I am in the same situation as Lisa. Perhaps you can contact “The Dignity Group”. They may have some ideas for you.
    I have a 14 year old autistic boy (he’s more of PDD) and I had to give up my job to care for him. I had to pick him up from school and/or stay home with him so many times that I was unable to keep my full time position. My husband who is in construction trade lost his job due to downsizing and we decided to start our own small company. Unfortunately, in today’s economy, it’s really hard to find work.
    We have no family here that could help us with all the issues that we’re facing.
    It’s really frustrating to see that our government is not helping all the families that clearly need the help. I thought we’re supposed to be the richest country in the world.


  14. Beth Finke, blog moderator Says:

    Lisa,
    Oh, yes. I forgot to mention how low a family’s income has to be to qualify for assistance. It’s rough –hang in there.


  15. Lisa Says:

    I agree with this article. I cannot work full time I work around my 16 year old schedule I work 2 part time jobs and still struggle and I can not afford any treatment programs I have found that seem perfect for him. Its a struggle and if we were to try to get any assistance they say we make too much money isnt that a joke.


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