Has Caring for a Person with Autism Affected Your Job Prospects?
Monday July 23, 2007
I started out as a freelance writer back in 1991 - before I got married, and long before I had children. As a result, my son's autism diagnosis, while it ate my days and still does, had relatively little effect on my ability to work. I could find time while he was at school - even if I had to come pick him up early. I could squeeze in time between naps, therapists and appointments. My choice of career turned out to be a huge, unexpected plus.
But not everyone with a special needs child can or wants to be self-employed. And for the vast majority of parents, this can be a serious problem. According to an article in a Maine newspaper:
Nearly three out of five working parents had to cut their hours to care for their special-needs child -- which is defined as a child with behavioral and/or physical conditions, such as autism or a disability -- said the report by the University of Southern Maine's Edmund S. Muskie School of Public Service and the Catherine E. Cutler Institute for Child and Family Policy.From what I know of families coping with autism, these issues are rampant. Are they affecting you? Have you developed any resources for managing the job/caregiver dilemma - or do you just manage the issues day to day?Other problems cited by the report include frequent changing of jobs, turning down promotions and fearing that a job might be lost because of the impact on work of the demands of caring for a child. More than 5 percent said they had been fired because their child's needs created problems on the job.
Comments
I am very lucky that my job is relatively relaxed, and as long as I stay on top of my work, I’m OK. My boss’ son was thought to have Asperger’s for a while though, and he didn’t believe the diagnosis, so when I told him about my son’s Dx, he was skeptical.
I’m very stressed right now, and have decided to cut other things out of my schedule, to cut back on my overall stress levels. We’ll see if it works. I need this job and can’t lose it (lose “it” refers both to my job and my mind!)
We’re very lucky. My husband is self employed and available if need be for emergencies. I was a SAHM for 8 years and went back to work when all the kids were in school full time. My daughters autism did affect my work. I’m now an instructional assistant with our county special education department! I have roughly the same hours as my children’s school, and can use skills I’ve learned working with my daughter to benefit others.
My son’s Asperger’s has absolutely affected my future employment. I am currently a stay-at-home mom to 3 boys, but am a CPA. I haven’t been in the workforce for 7 years.
I would love to return to work and this subject seems to come-up about every 3 months. The dicussion always ends when we decide that I can’t possibly go back to work because of everything that needs to be done for our son with AS.
One of us needs to be available for frequent IEP meetings, doctors appointments, driving to and from social skills groups among other things. In addition, I need to be available for school in the event there is a “crisis.” Also, things like homework and other daily skils take up more time than they would for other children.
Me going back to work which would be helpful financially, would cause other stress in the family that neither my husband or I am willing to take on at this point.
I have no idea when we’ll feel ready for me to return to work and I have no idea what I’ll do when I do. I don’t imagine I’ll go back into public accounting and I’ll have to find a job with some flexibility. Who knows…
YES, it definitely has affected my career!!!
I had to quit my teaching job - someone had to stay home to monitor and drive to everything. Once a teacher in my field is out of the work force (music), it’s almost impossible to get back in. Music jobs are scarce and teachers are a dime a dozen. I would be “too old” and would make “too much money.”
I teach 1-2 nights a week in my home studio now, but can only teach limited hours - because I have to teach AFTER school. Fortunately my husband is home and can drive here and there. But when I’m teaching, I can’t keep my finger 100% on the pulse of what he’s doing homework-wise, etc.
After he graduates, I will STILL have to be home - he will be home all day! How can I work??? What do we do then??? Work at WalMart? SSI stops at age 18 for the parents….
Yes. It definitely has affected my job. I was a supervisor, working full-time, and I expected to have to cut back when my daughter was born — but only for a little while.
However, since my daughter’s diagnosis at age 2 1/2, I have had to give up the supervisor position and cut my hours — drastically cutting my salary. Next week, I will start working nights. I work weekends so my husband can watch her. My days are filled with her school and therapy appointments.
I am fortunate that my job is flexible enough to allow me to work at night, but I would much rather go back to the pay scale and regular hours I had before.
I found it impossible to work when my son was younger. With all the doctor appointments and therapy sessions, etc.
I gave up my hopes of continuing to work. Luckily, with my husband’s job we could afford for me to quit. However, now that my son is a teen, and I’ve been out of the work force for so many years, I don’t know how I’ll be able to go back.
This story is so relevant for me and my family today. I basically lost it after my son got diagnosed. For the past seven and a half years I have struggled with two different Master’s degree programs and two jobs. I managed to make straight A’s but my family situation has given me a bad reputation. My husband is a great employee, and his job seemed very flexible concerning me being able to visit his office and my son even being able to come. However, without warning after seven and a half years, they have decided that I can not come in the public building which is a library and that my son can not come in. I have trouble handling my son by myself, and we receive no social services in the state we live in to pay for respite care, etc. I have severe anxiety and chronic fatigue, and it’s very hard for me to be far away from my husband. I’m not saying my behavior is normal, but anything I try turns out badly. I was doing so much better with my anxiety lately, and wanting to home school my son with help, etc., and now we get attacked. It’s so hard. Both my husband and I just thought we were going to loose it last night. You really can be pushed too far. It really can be too much stress when you don’t have any help from family, friends, work, or social services. Pray for me and my family.
Although having a child with Autism effects my daily schedule at work, I am fortunate to have a supportive workplace who understands, and is there for us when we need them. From missing time off work to take my son to appointments, having to go to the school to help bring my son out of a meltdown, to appointments. My co-workers are there for us. They’ll never know how appreciative we are!
Hello
Yes my sons diagonosis of autism, along with many others has definately been very hard on our family, it seems that noone totally understands all of the appointments etc that are truly involved. I had to give up my job 10 yrs ago to take care of my son, as the daycares and private home sitters wanted almost as much as I took home in a weeks check, I have almost given up the thuoght of ever returning back to work, and have been looking for a long time for legal and legitimate work to do at home, so far no luck, as much as the financial struggle has been and still is , I have no regrets, atleast I know for me I was the first one to be able to see our son walk, and smile and the teeth come in noone else got there before I did
I truly feel blessed every day of my life with my son, but as I said unless you are in any of our shoes caring for a special needs child, you have no idea what the daily living is like
God Bless You All
Our almost 7 year old son was diagnosed at the age of 3 prior to that my job performace reviews were excellent and my bonus would reflect that. My employer has been understanding and my schedule is somewhat flexible, but ofcourse my bonus decreased significantly to almost nothing. Also it took 3 years for me to obtain a raise after his diagnosis where as before the diagnosis I was receiving a yearly raise. I appreciate being able to use my lunch hour to come in a little later and leave a little earlier but the bottom line is that our expenses have increased significantly since the diagnosis. Working full time and being involved in every aspect of my sons day is very stressful. I am grateful that I dont have to worry about having to take a later train in because I need to take him to school instead of the school bus b/c of a meltdown or being able to take off for a cse meeting. The two hour afterschool care for my son has also not been so easy to fill luckily we have family that helps along with a babysitter. I think employers are understanding in the begining but as time goes by they become less and less tolerant, what they dont seem to understand is that this is a lifetime diagnosis and we deal with autism each and everyday, each minute of the day- there are no days off. Looking for a new job has its own set of anxieties b/c will they be as understanding as my previous employer? We are forced to then accept low bonuses or none and fewer salary increases just to be able to keep paying for therapies and special diets and groups activities to increase socialization exposure for our kids. Remember we are all connected by the same cause and we fight the same fight. Society has been affected by autism as much as each of our families have -they just dont realize it yet.
Yes, our sons’ diagnosis has definitely affected us & work. We had to make a decision and it was since I couldn’t make as much money as my husband he would be the one to support our family. As it turned out he has resented me all these years (our son is 14 now) and feels that I have used him as a “meal ticket”. I on the other hand resent the fact that he would think that of me. He has no idea how hard it has been to be home all these years with no one to talk to (our son is non-verbal) & have to totally rely on my husband for all my adult conversations. I have worked hard with the school system to fight for all we could get for our son to make him successful. For the 3 years that he has been in junior high I actually could have gotten a job. But, there are no jobs around here (or support to watch our son) that will cater to our needs. I can’t work summer vacation or spring break or the other holidays & bad weather days that our district gives off. So, what am I to do? I do what I have to do (out of love for my son) and that is stay at home, do my best for my son & hope one day my husband will realize he was the one who had it easy. It’s not easy giving up your life to serve others. I do want to be appreciated for at least trying to do the right thing.
I have left the job force since I am my grandsons primary care giver.I have decided to homeschool since the school systems have no clue as to what all these kids need.I have received rebuke from well meaning friends and family but I choose to do what I feel is best for my grandson.I have a degree in general studies with a concentration in Elementary Education and this is very valuable.I take him to church special needs classes on Sunday,Wednesday night AWANAS during the school year and Vacation Bible School during the summer and this gives him inneraction for short periods of time which is what he can handle at this time.
My sisters son has autism. Sadly, her husband, the childs’ father, could not DEAL with the disorder and chose to leave the family and pays very little child support. My sister lives hand to mouth basically. She gets SSI for B but it’s barely 500 dollars a month it’s just not enough. Every job she gets she loses since they won’t understand about a sick kid. Mostly service industry jobs of course..(sigh) The only reason she makes it is due to help from family and friends.
I have been dealing with this subject for the past 9 years and my husband still doesn’t get it. My son was diagnosed at 2-years-old about a week after my youngest was induced prematurely at 7 months, weighing less than four pounds. I became toxemic at 7mos which causes your blood pressure to be out of control. I have been out of work since the birth of my youngest and the autism diagnosis of my oldest. Now last year, I was diagnosed with breast cancer and I am still undergoing treatment. So many times these past 9 years I’ve told my husband how much I wish I could get in my car on go to work everyday, like he does. He doesn’t realize how easy he has it. He comes home, eats dinner, watches T.V. and goes to bed. During that time, I am probably changing my son’s diaper(he is now 11 and going through puberty) or putting my youngest to bed. I never wanted to be financially dependent on any man. I believe in providing for myself. Unfortunately, in life you never know what God is going to send your way. I worry even more now because my health is compromised. People who are on the outside looking in just don’t get it. Sometimes even family members don’t understand what it’s like to parent an autistic child. I would say to all the mom’s don’t give up on working outside the home. I know eventually, I will find a job that can fit my life. I’ve considered working for the school system or a special needs organization. At least they know exactly what it’s like to stand in our shoes. Moms,Dads, hang in there, God is on our side!!!!
Let’s hear from some single parent dads who have full physical custody of a child on the autism spectrum. How do they manage?
I go to work to rest! Yes appointments and scheduling is/can be very difficult, but, we manage day to day. One step at a time… we never know when the explosion is going to happen and we are always on our toes waiting to handle the next step.
It is getting better due to early intervention and special needs care. I took courses on Autism Spectrum Disorder and Pervasive Development Disorder, I found this very helpful to care for my child on a daily basis.
I found this link via a weblog where the author said that having an autistic child made her a sahm.
I have two kids on the spectrum and I have AS myself. I held down a successful career for 10 years and finally quit to start my own shop. This is my second business that I have owned… neither time was it because the kids were too much work or because I couldn’t hack it… it was because this is what I enjoy doing.
While I could understand where one is caring for a severely autistic person who does not have other care during the day that one’s career would certainly be affected, that reasoning extends outside of JUST autism. Autism or care of autistic kids in and of it’s self, doesn’t MAKE anyone do anything with their job or their career. There are always other options. It’s a choice, not a sentence.
Has anyone heard of a program where Walmart is hiring individuals with Autism?
Yes having a daughter with Autism has destroyed any real possibility of keeping a career. I am a Registered Nurse who works almost every weekend and some evenings on a prn basis. My spouse continues to complain I am not earning enough money even though he makes over 90K a year and I have made over 20k for the lst 3 years. My inlaws are constantly asking if I am working even though they never watch my daughter so I can work. My husband refuses to have someone come in and help so I can work more because he does not trust anyone. People are often jealous of me because I work prn. Do they not know how hard it is to be a caretaker 24/7? She is only 10 years old with a low IQ so she will probably live with us the rest of her life.