We have all seen those heartwarming videos of a child with autism speaking his first words after years of silence, bonding with a pet or a special friend, or celebrating the achievement of a task triumphantly. We are also fortunate to now have a number of series like Netflix’s “Atypical,” ABC’s “The Good Doctor,” and even “Sesame Street,” which feature characters with autism and shed light on what life is like for individuals on the spectrum. As wonderful as all of this is, there is another side of autism that remains cloaked behind the scenes ― the reality of what it is like to be a parent of a child on the spectrum.
My son is considered “high-functioning” on the autism spectrum, or moderately autistic. This means that if you were to meet him, you might not even be able to tell that he is on the spectrum. In fact, he was misdiagnosed as bipolar until he was 14, having been previously told there was no way he was on the spectrum because he was “too social.” Yet unlike the characters portrayed in “Atypical” and “The Good Doctor,” he is on the lower end of the IQ scale and is not blessed with superior intellect or knowledge of a particular subject, nor does he possess some amazing creative skill. Instead, for him everything is a struggle. Now 17 and a junior in high school, he struggles significantly in school, and his post-high school path is unclear, at best. In the neatly packaged storylines delivered in an hour-long program, we see the challenges of the individual on the spectrum, but you rarely get a glimpse of the struggles and emotions the parent is faced with on a daily basis.
NBC’s show “Parenthood” did a fantastic job writing for Monica Potter, who played the mother of Max, the character with autism, and it offered a very realistic portrayal of what it is like to parent a child on the spectrum. I was so incredibly grateful for the couple minutes in an episode that highlighted my reality and made me feel less alone. In fact, I credit the show for the role it played in me pressing for my son to be tested and ultimately diagnosed as being on the spectrum.
“Atypical’s” maternal character, played by Jennifer Jason Leigh, has received an interesting and somewhat harsh response in the autism parent support forums I frequent. Ironically, I also found I did not care for her initially, either. Upon reflection, I have come to realize that her character actually reflects a very real side of what it is like to be the caretaker of someone on the spectrum who is on the brink of being transitioned into adulthood ― a place I currently find myself.
I have come to realize that I see myself more and more in her character. I identify with her compelling need to try to control things to spare her child the pain and discomfort that likely awaits him in adulthood. I feel her pain in letting go a little and letting him experience life more fully. Perhaps what resonates most is her character’s crisis of identity, having devoted herself completely in her son’s younger years to his needs and his well-being, effectively losing herself, and possibly her marriage, in the process. Her character’s awakening of finding herself outside of simply being the caretaker of others was met with a great deal of judgment and hostility, yet I can honestly say that I feel her pain.
I completely understand and identify with how she got there because what you do not see in these programs is the mother crying on the floor of her closet after an emotionally exhausting day of her child’s meltdowns. Nor do you see the frustration after years of fighting school districts for services for her child to receive a fair education that accommodates for his needs. You don’t see the guilt and embarrassment felt by a parent who has been shamed by others for her child’s behavior in public, or shunned by family members or friends who do not understand why you don’t just “show your child who’s boss.” You don’t feel the crushing despair of the parent who has to explain to her child why he is never invited to a birthday party, or worse yet, who has a birthday party to which not a single child shows.
Yes, like any other parent, I experience great joy and happiness at my son’s achievements, and frustration and disappointment at his shortcomings, as one would with any typical child. Also having a neurotypical teen-aged daughter, however, I can say that with a child on the spectrum it is just different. Certainly when my daughter goes out with friends I worry about her safety, that she is making good choices, and all the other typical worries that come along with parenting a teen. But I don’t worry that she will encounter law enforcement and not understand how she is supposed to respond to an officer’s request and end up harmed as a result. I don’t worry that she will be taken advantage of when she orders a sushi roll and doesn’t understand that when she says she wants eight rolls that does not mean eight pieces, and end up with a bill for nearly $100 for eight full rolls, instead of the $8 intended to be spent for one, like what happened to my son.
Despite all of the worrying I do about my daughter, no matter what difficulties or challenges she encounters, I have the comfort of knowing that she will be okay. She will either go to college, or find a career path and be successful. She will live independently. She will drive. She will have friends, and ultimately a partner in life. When I am gone, her life will go on for the most part the same as it had before, and she will be able to take care of herself. With my son, there are not these assurances, and thus I am left feeling a range of emotions that often times is not something I necessarily want to share with others. It is isolating, and while cognitively I know that I am completely entitled to these feelings, the burden of them weighs heavily, and I am often ashamed for feeling them.
So, when you ask me how I am, I will likely answer, “fine.” But if you really want to know, I feel tired from the many hard years of fighting and advocating for my child, with many more years to go. I feel frightened and uncertain of what the future holds for him. I feel grief for all the things he has missed out on, and all the things he may never experience. I feel alone having carried most, if not all, of this burden on my own. I feel disappointed for how little I am able to do for him, and for how short we fall in providing better for individuals with intellectual disabilities. At the same time, I feel resentful and frustrated for all that I have to do for him because he cannot do for himself and there is no one else that will do it for him, or me. I feel ashamed for the times that I fail to understand him, and end up making him feel worse instead of better as any mother is desperate to do. I mourn the carefree person I was before I entered the world of ASD, IEPs, IDEA, and became reduced to list of acronyms I struggle to remember. I beat myself up that he wasn’t diagnosed sooner. I question everything I have done up to this point, and how I am expected to know what to do for him in the future. I feel fear of judgment in exposing these feelings, and that I will face harsh criticism for not rejoicing all of the beautiful things that also come with loving and caring for someone on the spectrum, or that I am not grateful enough for what he can do, and what we do have. I cry in my car and worry that I am not doing enough. And I feel guilty for all of the above. On some days, behind the scenes of the warm and fuzzy videos and television shows, that’s what it really feels like to be an autism mom.