No one knows what life is like raising a child with autism. As we know, each child is unique. There cannot be two children alike on the spectrum; this is why it’s called a spectrum. A spectrum is used to classify something or suggests that it can be classified as a position on a scale.
My desire is not to talk to you about autism, but to discuss what type of support is currently available for the parents of children living with autism. There is much to learn, and more developments are needed to support parents who have children with many types of special needs, including autism.
Living with autism or any type of special need comes with its challenges. However, most of the time it’s not just the individual who faces those challenges. We often forget about those who provide care for people with autism. Far too many times, the support that parents and other caretakers need to help provide adequate care for their loved ones are overlooked. So what does this mean?
Unique Challenges Parents of Children with Autism May Face
Parents that have children on the spectrum face many challenges. Being a professional and a working parent trying to maintain a job can be very difficult. As you know, children on the spectrum deal with various types of social, emotional, and behavioral issues. These can be triggered or upset at any time. What happens for the working professional when their child is in school, at daycare, or with a caregiver and has a meltdown when the person in charge can’t seem to soothe them or help deescalate the situation? Sometimes the meltdown can be so extensive that the person overseeing the child has no other choice but to reach out to the parents of the child having the meltdown.
Of course, no parent wants their child to spiral out emotionally. Many parents begin to feel upset and overwhelmed by the burden of not being able to be there to help their child. The feeling of urgency and the need to get to their children to help them through the meltdown is often all these parents can think of. What’s more devastating is considering how to accomplish that task.
Many parents begin to feel upset and overwhelmed by the burden of not being able to be there to help their child. The feeling of urgency and the need to get to their children to help them through the meltdown is often all these parents can think of.
As an employee, you can’t just pick up and walk off the job. Doing so will most likely put you at risk for losing your job. What about the parents who are trying to make it to work on time, but for whatever reason, the morning routine did not work out, and now one or both parents are running late? The parent may again be at risk of losing their job.
There is rarely financial support to help parents care for their children, so staying at home is not always an option. Trying to maintain a full-time job doesn’t cut it either, because of the needs of your child can be so unpredictable. This, in and of itself, can cause problems on the job, and parents can end up losing their job. One may think, “What about a two-parent household, where mom stays home and dad works?” This too becomes a problem, because one parent must then often shoulder the burden of that responsibility alone.
The parent who works long hours to make ends meet is likely to be less available to the parent at home and the children. At home, the other parent must manage the day-to-day activities of the house, including the special needs of the child. There’s little to no time for them to spend together, arguments may ensue, and stress levels increase. This often results in divorce or the end of the relationship due to the lack of financial, emotional, and social support for parents who have children with special needs. This is not everyone’s situation, but many experience these burdens.
How Support Should Exist for Parents of Children with Autism
So what type of help do I believe is needed to provide proper support for these parents? Here are six ways to start:
- Home health care should be provided across the board.
- The rules for social security benefits need to change to include financial support for caretakers.
- Specialized training for teachers, mental health professionals, and behavioral health providers should be a routine part of behavioral health services.
- Childcare facilities that undergo mandatory training to care for children with special needs.
- More jobs that provide childcare onsite.
- Early intervention education and training for families which includes counseling and classes that focus on teaching parents behavior modification.
I understand this struggle because I have a son who is on the spectrum. He is the cutest, funniest, most animated child I know. He adds value and meaning to my life, and he is the one reason I work so hard. Although I am a licensed clinical social work therapist, caring for my son does not come without its challenges of feeling stuck and just not knowing what else to do.
It’s easy to want to sit and write about my son, to tell his story and write about what living with autism is like for him, but I chose not to tell the story from his perspective; rather, I chose to tell it from mine, the caretaker and the caregiver. Yes, my son lives with autism, but so do I. As parents and caregivers, we travel along this amazing journey with our children. So, I like to think of myself as an Awesome Autism Mom. We are embracing the amazing together. So, don’t forget about the parents and caretakers. We need support too.
If you are a parent of a child with autism and feel that you need support or help, you can find a licensed and compassionate therapist who can help here.
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