Recently, on a Facebook support page to which I belong for mothers of children with autism, someone shared a blog post criticizing parents who refer to themselves as an “autism parent.” The author wrote of how, in her opinion, by labeling one’s self as such, they are actually just seeking attention or inferring to the rest of the parenting population that they are more special, more important than a parent who does not have a child with special needs - that they hold themselves as possessing something “extra” and seek to have a “spotlight” shone on themselves. To be fair, she prefaces this all by saying she does not mean it to be offensive, and understands that perhaps for many this is not the motive. Her stated intent is that parenting is hard for everyone for a wide variety of reasons and that there is really no need to emphasize the challenges a parent of a child with special needs faces. She also expresses concern that this is simply identifying the child by labelling him/her with a diagnosis. And I see her point. But something about the piece triggered and has stayed with me, and I have spent considerable time processing it to figure out why.
At first, I suspected this struck a nerve for me because I have a son with autism (aka “autism mom”). It is only natural that I might take it personally, despite her lengthy disclaimer that I should not. But I am not one who offends easily, so it bothered me more that this kept nagging at me. Am I guilty of using this label to describe myself? Yes, I believe I have. So I started soul searching for what it is I am seeking to convey when I do share this information. Am I trying to “one-up” another parent and infer that I am superior to them because I have endured countless doctor’s appointments, therapy sessions, IEP meetings, horrific meltdowns, or that any of this is exceptional compared to a colicky baby, terrible twos, teething, and the plethora of other challenges every parent faces? Absolutely not. So why identify the label, and if not seeking attention, what purpose is there for using it?
“Label,” as defined by dictionary.com means, “a word or phrase indicating that what follows belongs in a particular category or classification[.]” In reading that definition, the importance of why we label struck me - belonging. And there was my answer. Having a child with special needs, I am certainly no stranger to the fear of the label defining the person. But sometimes with a label comes the power of understanding that is far more valuable than any disadvantage. For instance, sharing a child’s diagnosis with a teacher empowers him/her to better assist and support the child in a classroom. While many times in the past I felt reluctant to share the diagnosis with teachers or other parents, I quickly learned how valuable the information was, and that my child was better served in sharing it. What’s more, as he has become older, it has taught him acceptance of himself, allowed him to be his own best advocate - which is my ultimate goal as I seek to have him become more independent.
What if the author’s message had been the same, except that it referred to “single parent,” “stay-at-home parent,” or “working parent”? I suspect they might have been as troubled as I am. What if we remove parenting from the labeling equation altogether? How might we feel if the article was arguing that people should not refer to themselves as “cancer survivors” because it infers they are better than those of us who have not confronted and conquered a horrifying, often terminal disease? Recovering alcoholic? Battered woman? The truth is we all use labels and not for the purpose of shining a “spotlight” or conveying superior importance over another. The purpose of the label is to indicate belonging. I identify with you. I connect with you and understand your journey. And in a day and age where it seems that we are met with some form of criticism or judgment at every turn, it seems almost necessary that we find that connection.
When I am in a group of people, there are many labels with which I might identify myself. If I am at a work or school event, I might refer to myself as a “working mom” to bond and connect myself with the other women in the room - not to out-mom them. It conveys an unspoken understanding of the challenges we collectively face in balancing motherhood and a career. When at a social gathering, I might identify myself as an “autism mom” to indicate to other parents who may also have a child with special needs that I am a “safe” person in which they can confide their internal struggles with the demands of parenting a child that requires more. It indicates that I speak his/her language of ASD, SPD, ABA, IEP, 504 plans, and the litany of lingo that accompanies parenting a special needs child.
Sometimes I disclose my son’s autism to gently alert other parents who may not have special needs children in order to avoid awkward interactions about why he goes to a different school or does not yet drive. That is not to say that I am not appropriately thrilled for or want to hear about all of the wonderful accomplishments of parents with neurotypical children. I most certainly am and do. While my son has what is considered high functioning autism, many children on the spectrum do not. Some are nonverbal. Imagine excitedly sharing with another parent about your child’s recent high score on a vocabulary test, only to learn that the person you shared that with has a child who has never uttered the words “mom” or “I love you” to them. Disclosing to someone that I have a child with special needs is sometimes a way to cue others to be a bit more sensitive to the things they might otherwise boast about to another parent - a defense mechanism I use to avoid being told something that perhaps I am too fragile to hear in that moment. Because contrary to the author’s point that the autism parent title is used to elevate parental status, I can tell you that for many of, if not all, the special needs parents I know, it is, in fact, the opposite. We agonize daily that somehow we are less, that we are not doing, or have not done, enough for these children that demand so much.
I also take issue with the author’s concern that the “autism parent” label reduces the child to his/her diagnosis as Autistic (or special needs of any other variety), or somehow diminishes the child. For many, the path to getting such a diagnosis is hard-fought. No one wishes for there to be anything “wrong” with their child. Yet, as a parent, when you suspect as much, whether you have spent days, months, or years waiting to have a name to put to that which you are dealing, it is in many ways an accomplishment. It opens the door to resources, understanding, support, healing. And why would we want to hide this from our child? It is not something about which they should feel any shame - whether the child has autism, Diabetes, a congenital heart defect, etc. We are all “different, not less”. If anything, I feel we should be moving more toward acceptance of whatever sets us apart and stop trying to hide it so much, especially where anything related to the brain and mental health is concerned. I have taught my son that there is no shame in having autism, and he shares this freely as he sees fit. He has learned that he can advocate for himself in school, to ask for a quieter environment, to take a break when he is feeling overloaded, and in a job interview he recently shared why certain positions would be difficult for him and how his autism would make him an excellent candidate for other positions. He is always a person first, but his autism is part of what makes him who he is and I do not discourage him from identifying with that.
In a society that is becoming more detached from people, I believe that we should wear our labels proudly if they connect us to someone. Whatever you overcame to earn your label is yours to own. There is no shame in a label, and thus should be no shaming a label. I believe it all boils down to seeking a place where we belong - to connect. So to all the autism parents, single parents, working parents, stay-at-home parents, soccer moms, cheer moms, dance moms, boy moms, girl moms, nursing moms, first-time moms, gay moms, stepmoms, heart moms, adoptive moms, foster moms, empty nesters, and the host of other “insert label here” people out there, feel free to introduce yourself to me how you please! I am glad to know anything about you that you care to share.