During the month of April, autism is talked about, debated over and sensationalized more than the other 11 months of the year combined, so it stands to reason if you write a blog about autism you are going to hear more from people who have autistic children. They want to compare notes, celebrate progress, cry over setbacks, but mostly, share with someone who “gets it.”
One such parent and I were swapping stories, sharing the good times and the bad. It was nice. It felt comfortable. It felt welcoming. Until it didn’t.
It got colder. It got weird. It got less welcoming. The change was subtle, but I recognized it because I have felt it before. “Ryan is not in the autistic support classroom. He is mainstreamed.” It was a statement, not a brag, not a contest. I was asked, and I answered.
I have seen this change before in other faces of parents loving a child with autism. The expression falls somewhere between disappointment, jealousy, sadness, betrayal to maybe even a little indignation. The face, especially if it belongs to someone whose child is in fact in the autistic support classroom, says, “He is not autistic enough.”
Just like the thousands of people who fall somewhere on the wide expanse known as the autism spectrum, there are equally as many family members who are trying to come to grasp with this diagnosis falling somewhere on the wide spectrum of acceptance. Like on any spectrum, some parents fall on one end while others fall at the other, with tons of parents falling somewhere in between. Much of this may have to do with where their child falls on the autism spectrum, how much time they have had to process their child’s diagnosis and where they stand in their relationships with the friends who seem to enter all autistic parents social circles, Denial and Acceptance.
Prior to knowing a child has autism, when we parents are in that “I wonder if…” stage, we are constantly comparing our child to their siblings, their classmates, their neighbors. Then once the autism diagnosis comes, the comparisons tend to switch from neurotypical kids to other kids with autism. It seems more “fair,” and I totally get it.
We talk with other parents at therapy appointments, at social skills groups, and we consume all we can online about other kids and adults with autism. There is honestly a sense of relief when we read a story online about a child who seems “worse off” than our own. “Well at least my kid can ____,” or “At least my kid doesn’t ____.” I get it because it is hard when a child is “different” so it helps to know that in some realms, those differences aren’t quite as different as others.
Although all autistic people have strengths and deficits, some deficits are much more profound. I understand that a mother whose child has seizures, is non-verbal and unable to be toilet trained has a much different life than my son and me, and while I am empathetic to their struggles, I should never be made to feel “guilty.” My son struggling with how and where to fit in and accepting that he is “different” than most of his classmates is much different than another mother’s son who is unable to communicate his basic needs. To say any one of them are “better” or “worse” feels like apples and oranges. Why compare an apple to an orange in the first place? Even though they may both be fruits, how they look, the way they grow, the climate they thrive in, are very different.
Yet we do it because we are human. I have a wonderful friend who is in my “gets it” club. Her son and Ryan are the same age, and they both have autism. We don’t compare the exact location of where our boys fall on the autism spectrum, but we seem to both be in a similar place on the acceptance spectrum. Sure, we compare notes and often find ourselves amazed by our sons’ unique yet similar differences, but mostly we support each other. We celebrate our boys’ successes and commiserate the days and moments that they struggle and the days and moments that we struggle. I have shed tears over her son’s successes and struggles as she has Ryan’s. We don’t think about which one of our boy’s is “more autistic.” We celebrate them for exactly who they are and confide in one another as we wonder one day who they will be. Yes, we compare, but mostly we share… with understanding, compassion and support.
I once was speaking at an event for mothers of children with varying disabilities. One mother whose daughter was nonverbal, in a wheelchair and on a ventilator told me a friend with an autistic child explains that she feels “guilty” when she complains about her child’s struggles since this mother whose child may never walk, talk or breath on her own had things so much “worse.” This mother looked at me with love and understanding and said, “I tell her there is no need to feel bad.Her child has autism and wanders away. I am grateful knowing I don’t have to worry about my child wandering and getting lost or hurt.” Apples. Oranges.
Regardless of the degree of differences in abilities and disabilities in autism, we should never be made to feel bad or guilty for our child’s progress. They have worked so hard to get where they are, and their progress has nothing to do with anyone but themselves. Ryan does not look at someone with autism who is nonverbal and uses an iPad to communicate as being “worse” than him. Ryan sees a different way to communicate. Ryan does not believe he is “better” than a classmate in the autistic support classroom. He sees a student who learns better with more support. Ryan does not believe that he is “more autistic” than another autistic friend who is much more social than him. Ryan sees a friend who just likes to chit chat while he does not. This is not because Ryan is hugely empathetic and extraordinarily kind. He just knows that his progress, his struggles has nothing to do with anyone but him. As parents, we can learn from this… no matter where we fall on the spectrum of acceptance.
Ryan may be verbal, mainstreamed and blessed with the gift of perfect pitch, but he is lonely, anxious and recognizes that he is “different.” He is not “better off,” he is not “worse” than other autistic kids. Ryan has strengths and deficits and where he falls on the autism spectrum is his place, his spot and he should never be made to feel badly about this spot he has been placed on, and as his mother, neither should I. There should be no judgment of what makes someone “autistic enough” any more than parents should be judged on what makes them “accepting enough.”
Ryan is smart. Ryan is funny. Ryan is compassionate. Ryan is musically gifted. Ryan is lonely. Ryan is anxious. Ryan is progressing. Ryan is struggling. Ryan is autistic. Ryan is Ryan, and that is enough.
Regardless of where we as parents loving a child with autism fall on the spectrum of acceptance, when we preach and advocate that autistic individuals are “different, not less” than neurotypicals, we need to keep that in mind within the autism community as well.
Enough is enough.
Follow this journey on The Awenesty of Autism.
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