Autism Moms in the Workforce
by Lesa Shusta
Ask any mother of a child with autism what it is she needs to make her life easier and undoubtedly the subject of more money will probably be high on her list. Children on the autism spectrum require a lot of extras that many parents take for granted. Unless a family is independently wealthy it is almost certain that a mother /parent of an autistic child needs to work. This is where much their stress and hardship are magnified.
Many parents of small children who have to work can rely on daycare. Although daycare can be expensive, there is a light at the end of the tunnel. There will come a time when their child is old enough to help get themselves ready in the morning and there will come a time when their child is able to care for him or herself before or after school. In the case of children with severe autism, it is like having a perpetual toddler to care for and this is a reality that does not change and will go on for decades.
Imagine waking up every morning , getting yourself together ( which is often times difficult enough ) and then having to wake a child and supervise every aspect of their morning preparation. This ranges in showering to dressing to brushing teeth, to eating, to packing lunch, packing backpack, and making sure all the of the rituals stay relatively similar everyday as to avoid unnecessary meltdowns. You need to coordinate your work schedule around the time that your child gets picked up for school, while giving yourself enough time to commute. If the slightest deviation occurs and heaven forbid the bus is late, or your child has a toileting accident right before the bus comes, you are now going to be late for work. The ride to work is often hurried and harried while you are calling your employer and needing to give them information as to why you are going to be late. Sometimes the information is much more than you care to share and other times, well meaning employers just don’t understand when you tell them that the batteries on your child’s favorite toy died which in turn precipitated a meltdown that registered a 9 on the Richter scale. Putting your child on the school bus in this very real “ state of emergency “ can be dangerous as meltdowns are unpredictable and can result in your child hurting himself or one of the other children. Now you have to wait for the meltdown to de-escalate and give your child a ride to school. Scenarios such as this or potentially worse are very likely to happen at least once a week if not more. Needless to say this does not make for a very productive day at work once you do arrive. The guilt and anxiety toward your boss, your co-workers and your child often times simply cannot be avoided. Many of these parents feel as though they just put in a full shift yet in reality the work day has not even started.
Another very real issue that mothers of autistic children who are out in the work force must deal with on a regular basis is that of needing to take time off for appointments. These children have medication checks, IEP’s , psychological evaluations, physical exams, mental health screenings, medical assistance re-evaluations, meetings with county case managers and many other essential and mandatory obligations that need to be attended in order to keep their support services current. Add to this a health problem that may or not be related to the autism but that still needs to be addressed and you can get a small picture of what it is like to try to juggle motherhood and a career outside of the home. A non-verbal child is unable to tell their parent when they do not feel well, so a well meaning mother sends them to school , walks in to work and gets the call from the school nurse that the child needs to be picked up. Again, the parent needs to take the time off to tend to their child. Again the guilt and anxiety creep in. As a mom, shouldn’t you have known your child was sick? Now your co-workers again need to pick up your slack. If you have a job where your work does not get done if you aren’t there, you have all of the extra work to look forward to the next day.
What if it is the Mom who gets sick and can’t come in to work? Should a mother waste a sick day on herself, when it is very possible she needs the following day off to take her child to necessary appointments? It is very unlikely that this mother ever uses her sick, personal or vacation time on herself.
All of these issues can make even the saintliest of employers very concerned about productivity and the best of employees feel as though their hands are tied. So what is the solution? Mothers of children with autism still need to pay their bills, eat and keep a roof over their heads. Expensive items such as safety locks, fences, gates and childproofing materials are a very real concern and an expense that gets more complicated as the child gets older. One possible solution that may work for everyone involved is legitimately working from home. In this way a mother can do what she needs to do to get her child safely off to school and then be able to concentrate on doing her work from a comfortable place where she does not feel rushed, apologetic, and where her master skills of multi-tasking, organization, dependability and responsibility can be utilized in an atmosphere where she is able to shine. There is such a need for a service like this for these tireless and caring women who want to be productive members of society and earn a decent living for their family. Hopefully there is a trend that is moving in this direction. Employees who work from home save on gas, and pollution related to commuting. Morale would be much higher and it is evident that there would be less worry and stress which makes for more productivity and better parenting. The key to making this successful would be identifying good decent employers who would be willing to invest in this elite population. This group has many skills and positive aspects to bring to the working relationship. With the proper research and willingness to find a good employee employer match, it is sure to be a win-win solution for everyone involved. The benefits and the positive ripple effect for all involved can prove to be priceless. Everyone can benefit, especially the innocent children who deserve to be supported by parents who are also nurtured and cared for as productive members of society and do not have the added strain of trying to fit in to an industry that through no fault of their own is unable to support them in the way it takes to successfully care for themselves and their children.