Autism Takes an Economic Toll on Mom's Job, Income: Study

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I am a mom of a 4 year old autistic girl. She was diagnosed two years ago. I feel like I’ve been treading water in terms of my job, friendships, really everything. I work, but have been doing the minimum to keep my job because I am busy being a “case manager”, “chauffer”, “researcher”, and “mom”.
I have chosen not to pursue a job promotion because I don’t have the time. It’s hard to make the time to maintain some of the friendships I had before the diagnosis due to time constraints. I also hate to admit that it’s sometimes hard to hear about my friends’ neurotypical kids who are meeting or exceeding developmental markers with ease, while my daughter has to go through endless hours of therapy in the hope of one day being “average or normal”.
No martyrs here; I’ve made the choice to take on these roles. However, it’s a choice I primarily made because of the cost, administration and location associated with my daughter’s therapy, and my husband’s lack of involvement.
This article and your comments confirmed what I had been thinking:
• There aren’t enough qualified and effective resources to help our kids maximize their functioning. My county would pay for some generic behavioral therapy, but not ABA therapy.
• The system is built around a nuclear family with a stay-at-home mother. That’s why they offer programs for 3 or 6 hours a day.
• Good therapies/therapists/programs are always farther away than the mediocre therapies/therapists/programs.
• No mother (special needs or neurotypical) ever believes that she is doing enough for her child.
• I’m not the only one who gets frustrated with the burden that autism brings. I grow weary of reading articles on the “gifts of autism”. Autism sucks!
• It is extremely hard to maintain a sense of self while attempting to do the best for my child.
• The gender disparity in the neurotypical world is even more unfair to moms with special kids, (i.e., we don’t get a break). My husband won’t take on very much of the autism workload, so he has time to pursue his career.
After reading the article and your comments, I am grateful that:
• I have an employer who gives me schedule flexibility. While I don’t have the time to work on a promotion, I am grateful that I do have an outlet outside of the home. It also helps to pay for a fairly reasonable, though not ideal, therapy program.
• I signed up for a cheap dance class. I love to dance, but I gave it up because I felt guilty about taking the time and money away from my daughter. Reading this article reminded me that I can’t allow autism to do that.

AJ from PA of PA 3:06PM May 31, 2011

I'm a highly-educated, professional mom who just found out that my 20-month-old son is "at risk" for being on the spectrum. They are starting to initiate therapies through our regional center but this will entail my being home with my son ALL of the time. I'm very resentful and angry that I have to throw away everything I love to do to stay home ALL of the time. My husband has the biggest salary of us and carries the insurance so it is all on me.
The enormity of the amount of sacrifice I will have to make is hitting me now, but worse than that is the enormity of the guilt. I just feel as if no matter what I do, there will always be something more I could have (should have) done. I also keep thinking that I shouldn't mind having to sacrifice, and I hear about all those hero moms that "do it all" and feel I should be able to do that too. Honestly, it just pisses me off. Other people in my life don't seem to understand ANYTHING about what I am going through, and I feel myself sinking into a deep depression.

Kate of CA 2:16PM May 24, 2011

When my daughter was diagnosed with autism, both her developmental pediatrician and a social worker told me that, in most cases, one of the parents of an autistic child has to quit working in order to take their child to the various medical and therapy appointments and classes required and to be at home for home visits, parent training, and to provide stability, routine, and intensive parent intervention (what about single parents!?!).
The other option, they said, is to hire someone to take my daughter to her appointments, classes, and therapies and work with her one-on-one at home. The local infant and toddler's program only provides 45 minutes of intervention per week, but the recommended amount is 20-40 hours per week! And it is rare to find insurance that will pay for autism treatment. I can understand insurance not paying for weird experimental therapies but ABA and speech therapy are research based and proven to help.
There is frustration and huge financial costs but I must say, I feel honored to join the ranks of angels who care for loved ones with autism. I have never met greater people anywhere and my daughter is a treasured blessing.

Sarah of MD 8:30AM May 16, 2011

I have found that I have to expand work hours carefully or working more ends out costing money because I need to pay for additional childcare.
I am a single mother and so I need to have child care for commute time and working hours. The school provides 5hr/day, for most of the year. I have to find the rest of the care, it has not gone so well. When I find someone reliable, who can stick with his behavior plan I find I am paying around $20.00, which is close to my own pay.
I also know that since changes are very hard on my son that any significant change in my hours and caregivers will increase my son's anxiety, and so a better position can really just be a chance for failure. I have found on 2 instances that my promotion meant near unbearable chaos for my son. In these cases I had to leave the better jobs and retreat to jobs the don't use my training or knowledge.

clgraves of MA 12:16PM May 14, 2011

I find the article accurate in its statements. As an highly educated mother of twin 5yr old autistic children I have had to quit my full-time job and take odd jobs here and there and not so much to make ends meet because everything I do make goes right back into gas and childcare, it's more for a break and some "normalcy" to keep me from losing my self identity. As far as child care is concerned it is almost impossible to find and at a good rate; most providers will charge more because there is more to do with autistic children. If it's not driving them to their medical appointments or therapies, it's cooking special foods for special diets, administering medications and then having to deal with the behaviors; it's really a lot to ask anyone to do other than yourself. I live in a state that just passed the bill to bring autism insurance aboard, however we will probably (A) never see it because of budget cuts or because (B)the lack of resources and providers. After the bill was signed by Governor Brownback, the state put the Autism Waiver up on the chopping block, the life line for some families who do not any access to health insurnace that covers Applied Behavioral Analysis, the rest of us get Zero! None of us are eligible for SRS or Medicade assistance of any kind, but you could if you were living on a household income of less than 25-30k for a family of four. I'm sure you have heard of the law "no child left behind?" well, our children have been.

Jan Medina-Meyer of KS 8:39PM May 12, 2011

My son has Autism, and although he is high functioning, I do have my limits with him. I can't leave him with just anyone, they have to understand his 'triggers,' and so younger/teens who used to babysit for me, are not going to cope with his outbursts. I used to be able to work at night, but now not able too, because of this situation. I can only work a few hours during the school day, since he is being taken care of. I make less than half of what I used to. And my husband does work more than 40-45 hrs. a week, to allow me to stay home as much as possible, and so we can try to pay the bills.

klarson of MN 11:26PM May 11, 2011

My son is 8 now and I have had to 'job hop' for the past 6 1/2 years. I'm never able to work anything over minimum wage for too long because of the lack of flexibility. His father disappeared when he was diagnosed leaving me alone and completely dependent of the kindness of my family and, at times, complete strangers.
I haven't been able to go back to school, and even online courses don't pan out like I hope. There's always a new therapy, a new treatment or some new part of the disorder I hadn't quite anticipated yet. I'm constantly being berated by people without kids concerning vaccines and therapies, and how I'm not doing everything I should.
I'm stressed out, frustrated, wearing thin, and now have become anti-social in many ways. I get called out of work because of a melt down in the classroom, or because he just didn't want to get off the bus or leave the school. Day care eats up whatever money I have left and my diet is interesting to say the least.
I honestly think they should do more for us moms with special needs children. We've gotten them this far, now it's time for us. What about us?

Tara of WA 10:37PM May 11, 2011

Well....when were they going to realize this? I have been virtually out of the workplace for ten years. I think we have lost a total of 450K with healthcare costs(provided by former employer) monthly paychecks and retirement. It sucks and sucks the life out of you when this is a part of your life. Not one mom could not say they do it best for their kids on the spectrum. It also adds an extra huge burden on the remaining breadwinner. I am back in the job market. I never get to tell my story because the people interviewing me are too caught up in their canned speeches and canned answers and realize I have not "worked" in a decade. It makes me sick. I spent 60K on an education and I seem obsolete. help.

Joanie65 of WI 5:20PM May 11, 2011