A friend of mine said to me, after we hung out for the first time in twenty years, “Your son will not be with you till he is grown. You guys are good parents and working hard for him.” This statement comes after a conversation we had about her own autistic son and how her goal was to make sure he is independent and “out of the house at 18.” I know she meant well but it just made me mad. I replied, “we are pretty sure our oldest son will be with us for the rest of our lives, not sure about our youngest.” She looked mortified when I made that statement like I had lost all hope. I am not mortified. I’ve accepted it. For her to question my acceptance was offensive to me. I think she felt that because we are “good parents” that of course our son would be “fine” and be able to leave our home at 18 like all kids do eventually. She is right, we are good parents, we work hard to make sure our boys continually learn, grow, and are happy. That still doesn’t mean that one or both will ever leave home. She told me all about the challenges she experienced getting her son “to this point”. I understood clearly what she meant, we all work very hard to get them to “this point” wherever that might be in their progress. Her son is verbal, can be left alone unsupervised, is included in general education classes, and is already showing signs of traditional independence- he’s 12 years old. My son is still considered non-verbal, can never be left alone unsupervised, is in a special education class, and is showing signs a toddler shows of independence- he’s eight years old almost nine. My son is also self injurious (he harms himself). I know we are not supposed to compare, but I do. I compare, a lot. How can I not compare? Standardized testing is all about comparing my kids to “typically developing” kids also referred as a neuro-typical children. I compare my kids to other autistic kids too. They might be “higher functioning”; able to carry a conversation, have friends, engage in family functions. I compare my kids to all kids, really, to determine what skills are the most important to focus on so maybe, just maybe, they can be independent. But independence can mean so many things other than moving out of the house. Can he dress himself? Will he remember to put on clean underwear, or any underwear for that matter? Will he remember to brush his teeth? Will he be able to call 911 if there is an emergency? Will he be able to call anyone if there is an emergency? Will he be able to drive one day? Will he be able to make his own meals? Will he clean his room? Will he fall in love? Will he tie his own shoes? Will he be able to fill out a form when asked? Will he get a job? Will he remember to take his supplements? We won’t know until we know. Therefore I have chosen to accept what is. What is, is that my son will most likely be with us for as long as we live, and it’s easier to accept it now than live twenty plus years hoping. Our younger son might leave home one day, but probably not at 18, and that’s okay too. I guess what is interesting about this particular conversation is that I’m comparing an autistic child to another autistic child, with a parent who is supposed to “get it”. She doesn’t seem to grasp the concept that it’s possible my child will never live on his own, have a job, get married, have kids of his own - she doesn’t get it. In the last five years I have realized that there are parents of neuro-typical children that don’t get it and there are also parents of neuro-diverse children.
When I first began my journey of autism acceptance I figured all parents of autistic children would understand exactly what I am going through at any given stage and be able to immediately empathize and we’d be friends for life bonded by our shared experience. Well that was far from the truth. This one comment my friend sent to me via messenger seemed to highlight all of the misunderstandings that can still happen within the autism community. When I say autism community, I’m mostly speaking about the children and parents, okay mainly the moms of autistic children. The moms of autistic children are the ones I have reached out to in the hopes of friendship and support thinking that we all “get it”. Most of the time, we all do, get it. But I guess the only part we universally get is that our child is autistic and that separates us from other mothers of “typically developing” children. I guess I too had to empathize with her and the misunderstanding was mutual. I take responsibility for that. I must have given her a look that stuck with her, to write to me a couple of days later after our conversation. I had to sit with why the innocent and well
meaning message rubbed me the wrong way. Maybe because I’m jealous that her son can have a conversation and be left alone unattended for long periods of time. Maybe because I felt it was insensitive and uninformed. Maybe because my expectations of her weren’t met. Whatever the reason, I sat with it fro a couple of days and decided to write about it.
Today, on World Autism Awareness Day during Autism Acceptance Month, I want you to take this away with you: each child is different, each autistic child is different, everything about their individual paths will vary.
Never assume that if you have met a child with autism or you have a child with autism that you know everything there is to know about autism or about the mother’s experience. It is a spectrum so vast it resembles a galaxy. The next time you meet a mom with a child on the spectrum, it’s okay to ask about the child’s likes and dislikes. It’s okay to ask questions that are specific to that child. Trust me, I know, I am raising two autistic boys and they are very different from each other in multitudes of ways. I welcome the kind questions that encourage acceptance of all of their uniqueness.
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