129. Witness Part 2

~ autismduniya

“Witness Part 2”

Recently I have been having way too many encounters of the unwoke variety. They make me question whether it is really worth talking about autism with people who aren’t autism parents themselves. Self censoring sometimes feels self preserving, doesn’t it? Insert the requisite hashtag here, that it is not all the people; I am not in the mood to write that out in detail. If you are not culpable, then don’t take it personally. But not being able to say what my life is like is a kind of suffocation. Perhaps people like me should stick to discussing it in support groups and on Facebook with likeminded parents. But I would like to believe that erasing ourselves from the company of people we love is not wholly necessary.

I have written on the subject of this sort of policing before.* But the reminders of how people perceive us are so multifaceted that recent happenings did not fall under the rubric of that previous blog post. So here we go, a different angle, a renewed parry and thrust. If you are up for some perspective, I appreciate your willingness to engage.

It is really simple: We know everyone worries about their kids. We also know that neurotypical kids can fall into all sorts of academic, physical, and emotional morasses, or develop serious illnesses which require lifelong care. But when we dare to express apprehensions for our kids, we are not competing with you, or trying to diminish your own parental struggles.

So please stop saying to us “We have those fears too. It’s not just autistic kids. NORMAL kids have problems too.” We know, but you need to listen to yourself.

First of all, NORMAL? You have to unpack that word choice yourself because I am not taking that journey with you. It’s too much emotional labor which I cannot be expected to perform.

Most of you know that I have teenagers now. They are not little kids anymore, but one of them is severely developmentally disabled enough that the daily challenges SOUND like the stuff you used to deal with when your own children were toddlers and preschoolers.

But sounding like it is not equivalent to being it. So even though you used to be afraid of losing your child in a public place, the impulse control eventually developed in your child, did it not? Now, if they run from you, God forbid, it is for entirely different reasons that therapy might be the best place to explore, and I mean that sincerely, not snarkily.

Chasing after an eloping teenager is leagues away from being a younger parent chasing after a toddler. I would really hope you try and picture what it is like for, say, my 53-year old husband, to take off into traffic after a 13-year old boy-man. Now think of me doing the same. And even if I catch him, sometimes I cannot keep hold of him. He is now stronger than I am. If he doesn’t want to be somewhere, like a doctor’s office, I will end up defeated. And judged by everyone there.

I was discussing Project Lifesaver** with a medical professional the other day—it is an electronic monitoring device for cognitively impaired adults and children who have a tendency to wander from home—because he asked if I knew of any helpful resources he could pass onto other parents. Imagine my horror when he began to say that the device should be available at the same discounted cost to all families because all kids wander. I don’t care to get into how silenced I felt; but I will say that if medical professionals think this way, ie. that services available to our autistic kids are somehow taking away pieces of the pie for Normal People, then it is hardly shocking that we get so much judgment and carping from everyone else.

Insert any other topic here: Oh, every child has feeding troubles; Oh, every child needs alone time after school, sensory stuff is not the only reason, you know; Oh, my child sometimes doesn’t talk to me either, it’s not just your nonverbal kid; Oh, every parent worries about adult kids. I am amazed at how little exposure people have to our daily realities. It is a luxury to imagine that a lifelong cognitive impairment, often accompanied by baffling co-morbidities, is somehow a resource and attention stealer from your neurotypical darling’s journey.

But it does help me see very clearly the reason for the general societal indifference. We are not just up against potentially violent or bullying external forces. We are also facing people who claim to love us but really do not see outside their own spheres of interest. If you have teenagers (NOT toddlers) and you are able to work at your desk, change your tampon without rushing frantically, take a shower, clean the garage, or do pretty much anything you would do at home without having to do those things only when your spouse is home, or when your child is deeply asleep or away at school—then no, you do not have the same life as we do, and should probably get on your knees and be thankful for that. Similarly, if you have never had to tackle autism-related feeding crises, and years of further treatment, please please consider what you mean by diminishing the PTSD and terror my husband and I still feel in our own ways.

Recent convos have also involved being compared unfavorably to other autism families that people know, and then, no surprise, it turns out the kid in question is more mildly autistic than A. I would never have guessed! Of course, since it is probably easier to explain to and corral Mythical Other Kid, it is also easier to trot out stories about MOK because it is always more satisfying to talk of scenarios that are less overwhelming. If you don’t want to face up to the fact that I, your friend, have a family situation which your homilies cannot solve, it’s probably best we just don’t talk about autism. I cannot walk the path of homilies with you, but I wish I could, because then I would be assured of keeping more friendships than I have lost all these years, wouldn’t I?

Talking about autism does not equal asking for advice. I hope you know that.

If you’ve read this far without spluttering about all the caveats that came to your mind, and thinking how ungrateful I sound, thank you. I am deeply aware of how fragile my relationships are, and cover my mouth more often than not so as not to burn every bridge that still connects me to Neurotypical World. But the price of belonging is sometimes so steep that I want to withdraw all the drawbridges and let the moat shimmer undisturbed between everyone and us.

Think about why people expect us to sound more grateful. Why the price of staying connected to all of you should be autism erasure.

I do want to say how thankful I am for young people. In recent years and months, people younger than 35 seem to have demonstrated a greater wokeness and given me a lot of hope. And I am seeing that especially in the LGBTQ communities we are fortunate to inhabit. I learn a lot from their deeply felt desire to birth themselves into more loving worlds. They will lift us all up with them. But we have to accept them for who they are without caveats.

The thing is, people like me are not writing just because it’s therapeutic or cathartic. It’s hideous to do this kind of writing, and renders us vulnerable to finger wagging and further distancing. But we do it because there are more of us than not, and we all live like this when we shouldn’t have to. I take a risk every time I say stuff like this. Please meet me halfway by really listening.

Radha.

*https://autismduniya.com/2018/01/15/89-witness/

**https://projectlifesaver.org/

11 thoughts on “129. Witness Part 2”

  1. I think I understand something of your frustration. I see the same process at work elsewhere — certainly if I speak about my young relative on the spectrum and if I raise the topic of ageing. I love your saying that to talk about a problem is not asking for help! I try different answers when people utter cliches like “you’re not old!” I think they mean well and are trying to allay their own fears by keeping the aliens at bay. I quietly contradict them. For you it is so much tougher. Yours is a brave blog. Be kind to yourself.

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    1. Thank you so much for this insightful comment, Rachel. I deeply appreciate it. Do you have a blog as well? For sure, we all try to allay our fears by saying comforting things, or we hope they are comforting. I have been trying to sit with this reaction since I wrote this post, and do end up coming back to how, the rest of the time, it’s pretty much business as usual, and my support groups show me that too many of us are in the same situation. So much rowing alone in circles.
      My parents and in laws often talk about end of life emotions, and I feel terrible because I don’t know what to say. I know I should normalize talking about it because it’s what’s around the corner for them (just typing that made me feel sick), but I also feel sorrow and anger.

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      1. I see from this conversation that we are not alone, even though it often feels that way, even though many of us can show empathy without understanding. My blog is writeintolife.com. I would love to see you there.

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      2. Your parents will probably be relieved if you simply acknowledge that their feelings are real. You are already open and aware… and all too human! Kia kaha.

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  2. I want to thank my dear Facebook readers for their thoughtful responses. Facebook has been so moody this past week, I could not post any further comments, so I decided to do it here on the blog instead.

    I can understand that people are trying in their own way to relate when they say stuff like “other kids too.” Sometimes in the moment we don’t know what to say that will be adequate also.

    I am making myself learn, though. I will never know what it’s like to have autism, and acting like I know just because of parenting would be so leadfooted of me. So I do my best to avoid/own up to the blunders that make people feel dismissed, or like their experiences are being co-opted or exploited.

    Autism behaviors can be managed up to a point, but then the innate re-channeling of hyperfocused energies will still always reassert itself. Every time A is encouraged not to do something, and redirected, he turns that energy to something else. After that, there is only living with the realities, and everyone trying to carve out space for mutual survival. So I suspect that is why people put some fairly steady pressure on us to say very upbeat, normalizing things, or say nothing at all.

    This is why I like my blog, and I love you all for being willing to engage with it. It is a complicated journey, and having friends who are willing to examine their own discomfort and reactions is just amazing to me. I cannot say enough how much that means to me.

    Thank you specifically to Nanthini, Meredith, Austen, Angela, Kamala, Courtney, Jenny, and Lanee—your comments both uplifted me and gave me food for thought.

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  3. Hugs If only you could come up with something akin to USA southerners ‘ Bless your heart’ when someone says something stupid to you…or maybe that.

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  4. I’m not nearly as eloquent as you Radha so this may be a mess but here goes. In the last few years I have become much more aware of how much we fail as a society at dealing with negative emotions. Our inability to manage those emotions leads to minimizing others’ difficulties, offering ways to “fix” or “cure” the problem, useless platitudes, and other failures that range from unhelpful and harmful.

    Other people’s pain makes us uncomfortable and if we can’t make it go away the quickest way to feel better is silence them. Or stop listening. Saying all kids have X issue or equating your X to our Y experience (toddlers running away) both minimizes your struggles and eventually silences you. If only we could take our experience with a hellion toddler as the basis of some empathy instead of a way to normalize, or maybe more accurately diminish, your struggle.

    Last year my brother’s wife passed away after a long illness with several ups and downs. We were estranged for nearly all of that time. Shortly before she passed we reconnected via text through my brother and I went to visit. Unfortunately, I got there a day too late to be able to communicate with her. My brother and I were able to talk though and I sat at her bedside with the family for days until she left us. The background is important because even though I loved her and her death was painful I was removed from the worst of her struggles to that point.

    A few friends were fantastic about being supportive without minimizing the experience. What I noticed though was that when they said they were sorry for what I was going through I tended to minimize it. From both sides – needing support and giving it – we are trained to minimize. I truly believe my sister in law’s passing was much more painful for her husband, parents, sisters, and my parents than it was for me because of the nature of the situation. That doesn’t mean I felt no pain.

    This need to minimize is so pervasive. It also makes your voice so much more important. I love reading your blog for a variety of reasons, but the fact you continually speak your unvarnished truth is what I love most. It is so needed in our world and while I hate that education is another form of emotional labour for you to take on, putting your experiences out there and refusing to shrink down from them is amazing. You also may not hear enough encouragement in your life. Many of us kind of suck at giving praise too. You may feel like a disaster some days or that you’re barely hanging on. But even then I look at you and see a wonderful parent I aspire to be like. I see your strength, tenacity, authenticity, and beautiful heart.

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    1. Thank you for such a beautiful and profound response, Andrea. I am sorry it took me so long to compose a reply. I had tears when I read your words, and then the whole blog topic just enervated me, so I stayed away.

      Your account of how you processed your sister-in-law’s passing really moved me. You see how the distance allowed you to feel a little less of the grief, and that is a whole lot of awareness right there. I am so sorry for your family’s loss. I remember when you were going through it. ❤️ It cannot have been a one-time set of emotions.

      And that’s very true—we are encouraged to minimize. Especially women.

      I truly don’t know what to say about how you perceive me. That you were so generous as to take the trouble to say that is stunning to me. But I will say, you are right. The people who say encouraging things are few, and I value all of you beyond measure. And the crux of what I wrote is hidden in this point, isn’t it? At the heart of all the erasure and advice is really criticism and/or discomfort.

      Thank you again for writing so beautifully and for being willing to put such a personal side of yourself in there. I want to honor your sweetness and courage.

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  5. It is totally understandable the hardship you are going through. I think that when people compare their non-autistic child with your‘ s it not to diminish your responsibility and burden but to reassure you that other children/ young adults also have difficult phases and that they can to some degree correlate to you.

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