One of the single best pieces of marital/relationship advice I was ever given was: Every day record all the things your partner did that was kind, helpful, thoughtful, ‘right’. What are the things you love about this person? What do you admire about this person? What do you respect about them? What are the things they do that make you happy? What do they do that fills you with joy? To many, these questions may seem obvious, but try doing this when you’re angry or fearful or even just annoyed. I remember sitting with my journal that first evening and wondering what the hell was I going to write? He breathes? Could that really be seen as a good thing? (It’s okay to laugh.) I’m a master at this exercise now. In fact, I’m so good at it, I now think of the positives FIRST! And guess what? My marriage is pretty fabulous, of course it helps that I’m married to such an amazing guy.
The first time anyone asked me about Emma’s assets we were a year or two into the diagnosis. I thought it was a trick question. Seriously. It was my brother Chris, who asked, “What does Emma like to do? What is she interested in? What is she good at?”
My mind went completely blank. No one had asked me these three important questions about my Autistic daughter. Listing assets does not fit neatly into all those questionnaires I was constantly having to fill out. Those little booklets with questions broken into categories of age. Example: From 3-5 years old: Your child plays appropriately with toys The choices were: Never, Rarely, Sometimes, Usually, Always. My pencil would hover over the choices as my mind raced. What does “appropriate” even mean? Why is pretending a doll is an actual baby, when it clearly is not, considered “appropriate”? Eventually I resigned myself to the task and considered “Rarely” and “Sometimes”. Depending on my mood, I would mark one of the two and feel the all too familiar sensation of constriction in my stomach and throat. Fear flooded my body and mind as I tried to concentrate on the next question: Your child eats using all utensils. Again I would resist the urge to fudge the truth. I had to force myself to choose the answer that came closest to reality. I came to dread those questionnaires almost as much as reading the evaluation reports sent in once a year from the Board Of Education. They were both exercises in, so-called, critical thinking – Look at this picture and tell me what’s wrong with it. Look at this child. Now let’s compare her to her neurotypical peers. Let’s make a list of all that’s “wrong” so we can make things “right”.
But wait! How is this helpful to anyone? Comparing anyone to anyone else is a lesson in how to live one’s life in hell. But compare a neuroatypical person to a neurotypical one is absurd. Why do we even do this? To what end? How is this helpful? Certainly it isn’t helpful to the neuroatypical person. We do not say to a person who uses a wheelchair, well, you’re not walking and your same age ambulatory peer is, so let’s get you up and out of that chair and try to build those muscles. Then, when you resist or protest, we restrain you, tell you to stop complaining or tell you that you can’t fully comprehend the situation. When you still do not manage to stand, let alone walk, we shake our heads sadly and tell you, you really need to have a better attitude and try harder, but don’t worry, it’s okay, we’ll keep working on it.
What does this thinking do to a person over the long-term? If we are judged, compared, relentlessly criticized, taught that we fall short, told we don’t measure up, dissected publicly, privately and shunned, what does that do to us? What would that do to any of us? We are, after all, regardless of our neurology, human beings. We do all share that. Has the human piece gotten lost in all of this?
What does she like? What’s she good at? What is she interested in?
I’ll have to get a bigger pad of paper.
Em at Gymnastics – October, 2012
Once again, you’ve made my caffeine-laced mind think, Richard! It’s so easy to want to “fudge” the difficult answers and focus on the negative, sharing notes with friends about the negatives. I’ve been married for 12 years this year. We may have our share of ups and downs, but when I need him the most, I know he has my back. When my hair started falling out last year after my 2nd round of chemotherapy, my husband shaved my head. And he cried with me as my hair fell to the ground. I can easily say I probably don’t tell him as much as he deserves what I like about him, what I appreciate about him and what he’s truly good at. I need a pad of paper myself.
Alexandra – if he’s anything like my husband, he’ll be incredibly grateful to be told! Glad you are okay.
Wow, Ariane, you’re REALLY on a roll lately! One amazing post after the other! Seriously, the last week or two has been an avalanche of amazing.
I adore my husband, he’s an amazing guy, and I don’t tell him that nearly enough. We have a great marriage despite it all, and believe me, he’s put up with years of issues from me! I’m only now beginning to appreciate how much I’ve put him through, and how lucky I am that he stuck around.
Did you know the divorce rate of ASD parents is somewhere at about 80%? Scary, huh?
Thanks Angie! 💗
That figure, (one I read years ago and believed) has since been pretty thoroughly discredited. (http://www.kennedykrieger.org/overview/news/80-percent-autism-divorce-rate-debunked-first-its-kind-scientific-study)
You always give me the best ideas for additional blog posts, Angie!! Coming next week, The Disconnect around Divorce and Autism
PS LOVED hearing about your meeting last night. So, so great. It made my day.
That’s interesting -I guess it hadn’t crossed my mind whether or not the statistic was still current, or ever really was. It’s something I’ve heard repeatedly over the years, and with the “normal” divorce rate being around 50%, it doesn’t suprise me that ASD parents would be higher. Go figure.
The meeting was actually pretty enjoyable. I’ve met all these parents before, but we don’t get much of a chance to just sit around and talk. We made a contact list so we can all communicate amongst ourselves, and are planning some holiday get togethers for the kids.
There are two people there who especially inspire me. They are actually closer to grandparent age. They’ve been foster parents for over 30 years, and adopted the little boy in Risa’s class. This boy had been neglected for years – locked in closets, was pretty much starved. It was pretty horrific. He’s eight now, they adopted him officially about a year ago, and this little boy has made amazing progress. The patience, love, and devotion they have for this kid never fails to make me want to be a better parent. (Kind’ve like you do!!) Going to the meetings would be totally worth it even if they were the only ones to show up! 🙂
Interestingly enough – the dad was telling a story about a certain developmental pediatrician who he pretty much wants to smack the crap out of. He didn’t mention a specific name, but I knew immediately who it was – and when we spoke afterwards, he verified my suspicions – this guy and Risa’s developmental ped are one and the same! I made an appointment with a highly regarded DP from Children’s Hospital the other day. We don’t see her til February, but if they hit it off, I am SO giving her other doc the boot!
This is so great Angie. It sounds like a great group and I’m glad you’re looking for a new doc for Risa! I think you’re on a roll too!!
My wife would have to sit blankly for a while . . . A long while. Then she’d smile, and say, “he tries”. AWOooooooOoooo! I always meet people on best terms.
well, there’s your howl and sense of humor, insightfulness, brilliant mind, thinking in patterns, kindness, love of nature and poetry, you write beautifully, are very talented, sensitive, thoughtful… just thinking out loud here… and then there’s always the fact that you do breathe after all… and that’s always a good thing!
That’s one of the things that upsets me so much when people justify killing their children with disabilities. In every case I ever read about including one here in Canada where the press was very sympathetic to the father there were clear likes, and preferences. I never looked after a child no matter how severe their disability that didn’t have something that made them feel better than others and while it would be a stretch for some of them to consider them good at much that they had personalities and preferences was always obvious.
You are right the questionaires don’t make a lot of sense. I have seen quite a few of them over the years. It always seemed odd that if the parent themselves had to fill them out for themself they wouldn’t necessarily score that high on all of them.
I have an enitre paper that rants about apporpirate toy use and the mind boggling number of scientific hours that has been poured into it. (Since I had blown my cover entirely in university anyway when a savant skill came up in a project I was working on that I was autistic was known) At the end of it I bascially conclude “Leave those kids alone” only in more academic terms. I got an A but the professors only remark was interesting. I couldn’t tell if she found it interesting I had come to a conclusion that might be based on my own autism or what she meant. I still wonder. Unless I misunderstand what a toy is supposed to do I always thought they were to provide enjoyment so why does it matter if that enjoyment comes from spinning the wheels rather than rolling the dang thing along the floor? It’s not like the kid is going to grow up and drive a match box car.
I do get that there is a notion that if autistic children play with toys “appropriately” that non-autistic peers might join in. It’s a flawed premise. The kid who joins in because you are playing “right” won’t have any patience at all or appreciation of anything else about you.
I was blessed in grades 4-6 with a friend who accepted me as I was. I spent a year of that time speaking only like a robot so it was a stretch, I would imagine, but she would always just make it about my scientific brain and on we would go. A friend like that doesn’t pop up because you are doing things in the way some random group of people has decided is right. There were things about me she enjoyed and couldn’t get from others and could see past my oddness to appreciate those.
Oh Gareeth – this made me laugh – “Unless I misunderstand what a toy is supposed to do I always thought they were to provide enjoyment so why does it matter if that enjoyment comes from spinning the wheels rather than rolling the dang thing along the floor? It’s not like the kid is going to grow up and drive a match box car.” Seriously. Laughed out loud. Thank you for that.
I have to say, I just love reading your comments, Gareeth, just love reading them and often read them several times.
*Now, if only the rest of the world was more like us, everything would be so much better… Smirk. 😉
“It’s a flawed premise. The kid who joins in because you are playing “right” won’t have any patience at all or appreciation of anything else about you.”
And this keeps being true throughout life, as far as I can see so far. If you’re only acceptable or interesting or lovable when you’re doing things someone else’s way, when are you ever appreciated for doing things *your* way?
“A friend like that doesn’t pop up because you are doing things in the way some random group of people has decided is right.”
No indeed. All of my best friends are my best friends because we’re quirky, distinctive people in ways that are good for each other. Not because we play like other people play, but precisely because we don’t.
And yet society continues to believe that making another “indistinguishable” is a worthy goal, regardless that it’s insisting that person live a lie. Having lived a lie for a great many years (bulimia) this particularly resonates.
Gareeth, I would like to see your study. Ariane, great post as usual. I wasn’t going to read it because it has the “m” word 😉 and mine did not work out so well. But, glad I did.
Oh no! The “m” word is probably a trigger for a pretty large group.
Always love seeing you!
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I will try to find it. It’s old now. Was basically a lit review on the topic of appropriate toy play and autism.
Looks like Em’s gotten farther than I ever did in gymnastics. 🙂 That is some serious core strength right there.
Right? I’m pretty much in awe of her at this point.
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You are definitely asking yourself the right questions….
– What does “appropriate” even mean? Why is pretending a doll is an actual baby, when it clearly is not, considered “appropriate”?
– But wait! How is this helpful to anyone?
– What does this thinking do to a person over the long-term? Has the human piece gotten lost in all of this?
– What does she like? What’s she good at? What is she interested in?
You guys are having an excellent influence on me! 😀
I’m taking out a large pad , 8″x11″, and listing what Emma likes, what she does well, when she laughs, so much more…..I’ve already turned the page once….
I think I was the opposite. What I saw as strengths in my children were actually what I was later told were “disabilities “caused by their autism. For instance he found different ways to make a toy work- I thought that clever and creative- I was told he didnt have appropriate play skills! Or he could tell me the name of cars before he could barely speak, pick out what kind of train was approaching – a freight train, the city train, a v-line train( we lived a few blocks away from a train line) , he could even here them long before we could- well they were ” fixed interests. I wrote these down as his strengths when I went to visit a paediatrician as my son was showing language delays and I thought he just needs a referal to a speech therapist Oh and sa for the doll thing- ask Roslyn what any of her dolls are called and she will tell you “doll” and look at you as if the answer should be obvious. She doesn’t give them people’s names and doesn’t seem to understand why you would- because I guess they are plastic dolls not people.
At the end of the day it’s all about gratitude I could compare myself to other people and say “I can’t walk” but I choose to say “i can see, feel, hear, taste, touch and talk” it makes a HUGE difference because i’m focusing on all the things i can do instead of focusing on the one thing I can’t do.
Maybe this is recent, or maybe it’s just in my state or the school district we live in, but the only time I’ve had to answer those ‘focus on the negative’ questions was during the evaluation process. Once the diagnosis was made, they stopped comparing my son to NT children his age, and began instead to look at the progress he was making. Everyone who has ever worked with my son adores him. His bright blue eyes, long, curly lashes (he got those form his dad) and his dimple infested cheeks (that sounds bad) just win over everyone upon first glance. Because the professionals who have worked with him have focused on his progress, rather then where he still has deficits, that’s been my focus as well. And when he first responded to my ‘I love you’ with his ‘I love you too’ without being prompted earned him the biggest hug of the year. I’ve actually been seeking information from adults on the spectrum to get their input, what is best for my son, rather then what society thinks is best for him, or worse still, what is best for them. I want my son to be able to self regulate, and he’s gotten so much better at it over the past year, I want him to learn to communicate without having to ask questions of people, using the words they would say to him, to let people know what he wants or needs (saying to me, ‘Are you sleepy’ when he’s ready for bed, for example.) I want to help him develop his strengths, which appear to be music and math, but I’m not sure how to go about that. Of course I also want him to read, write and be able to do basic math. I believe they are still working with him o develop the best learning method for him. We have his IEP meeting in March when he turns six and I do get regular updates from his teachers at school, but I like to look back at what his skill were the year before, what the goals were for the coming year, and where he has progressed to. My son is blossoming, I want him to be the biggest, most beautiful bloom in the garden! So yeah, I don’t want to know how he compares to NT children his age, but how far he has come from last year and how can we help him make his strengths stronger. Isn’t that what NT children’s parents want also?
Great pic Emma!! You look like you are doing AWESOME in gymnastics!! Wonderful! :O)
Upon reading the comment regarding those (accursed) questionnaires, I feel reminded of a line from Naked Lunch: “he degrades and simplifies the client.”. This was speaking of a ‘pusher’, but the basic concept seems applicable to most of society. In this case, the ostensible purpose is to make inputting ‘basic information’ a quicker task for the questioned and an easier (numeric tabulated) process for the inquisitor.
There’s much more to it than that. Some possibilities: 1) intercept with preconceived notions in both parties; 2) facilitates manipulation of the ‘client’; 3) causes the client to implode ( happens to me a lot!).
In short, substitution of those #$%&@! questionnaires for thoughtful questions facilitates a great deal of wrong on the part of the inquisitor, and reduces, ultimately, the one being questioned to an ‘being functioning by instinct’ – an objectified tool which exists for the inquisitor to achieve his/her goals.
I avoid those things when and where I can, even if it means a Lot more work on my part.