What We Would Have Done Differently Had We Known What We Know Now is the longer version of the above title for this post.
Someone left a comment on a post I wrote about a year and a half ago – Want to Know About Autism? Ask An Autistic. In the comment they asked a number of questions and because they are questions others have also asked, I’m writing a post devoted solely to answering them.
“What would you have done with Emma if you had not fought your seven year war? How would you have spent that time with her knowing what you know now? What do you think would have been of most benefit to Emma when she was still too young to type? How would you have gone about learning assuming competence?”
“What would you have done with Emma if you had not fought your seven year war?”
The “seven-year war” they are referring to is one I describe in that post detailing all the things I did upon receiving my daughter’s diagnosis. To contemplate what we would have done differently had we known what we know now is both exhilarating and painful, but I’m going to give it my best shot…
The short answer is – we would have done everything differently. The longer answer is vast, so vast I don’t know that I can do it justice in just a few paragraphs, but I will try…
Once we were given her diagnosis I would not have done any of the therapies suggested other than occupational therapy. I know this will strike many as radical, even negligent, but I am speaking very specifically about my daughter. Right from the beginning, knowing what I know now, would have changed all of my thinking, reactions and response to my daughter. All those years spent trying to “help” her were years marked by fear, distress and worry.
I know now how sensitive Emma is to other people’s emotions, how she picks up on all of that easily and how distressing it can be for her. So there are things I would have done that actually have nothing to do with Emma, but that would have helped me be a better parent to her. Reducing my fear and constant worry would have been helpful to all of us. In order to do that I would have had to ignore pretty much everything I was being told about autism and what that meant for my child. The information we were given in 2004, the year Emma was diagnosed, was presented as fact. And, as it turns out, it was incorrect. I cannot think of a single thing we were told that did not prove later to be wrong. Think about that for a second… Every single thing we were told was incorrect. Everything. (Richard, correct me if I’m mistaken about this.)
A quick aside – this is where, the way our society is structured has done none of us any favors. If we lived in a truly inclusive society where autism was not denigrated, but was considered just another neurology, no better or worse than non-autistic neurology, where there was no judgement placed on either neurology, but more was treated as fact, where everyone came into contact with both neurologies on any given day in a variety of settings, “autism” would not be viewed with the fear and worry and even terror that it currently is. When I say “inclusive” I am using that word literally and not code for “tolerating” or “understanding” or even “accepting.” I mean a society where all neurologies are treated equal, without comparison of one, which is thought to be superior, to another considered inferior. An inclusive society would mean “accommodations” would be embedded into our daily lives seamlessly and without fanfare, just as the many accommodations non-autistic people enjoy without even noticing them, do.
I would not have sought out the advice of the slew of doctors and specialists we carted her off to. I would have surrounded her with music, singing, dancing, lots and lots of movement, gymnastics, swimming, trampolines, trapeze, art, literature, poetry (much of this we actually did do.) Had Soma begun her center at the time of Emma’s diagnosis, I would have begun learning RPM and implemented Soma‘s suggestions for very young children right away. Beginning with isolating the index finger to point independently and moving on to presenting written choices, for everything and anything – “do you want some M-I-L-K or do you prefer J-U-I-C-E?” Writing each letter, while saying the letters out loud as I did so. Encouraging her to point to the two choices I wrote.
There were many things, looking back, that we did right, things we did for both our children, such as getting her on skis when she was just three years old, horseback riding, lots of hiking, carrying her in a back pack, Emma loved being carried in a Kelty pack so she was able to view the world at the same height as me. We took the children to the theatre, puppet shows, kids concerts, and traveled on airplanes when they were both babies. I began brushing their teeth the minute that first tooth came in, I cannot tell you how grateful I am that I did that. I began flossing their teeth the instant a neighboring tooth appeared. I read to the children and provided both of them with lots and lots of books. We exposed our children to art and literature; these are all things I would not have changed.
“How would you have gone about learning assuming competence?”
Presuming competence is ongoing. It’s a practice, a mind set and it requires a leap of faith. Or at least this is how I have come to view it. Presuming competence is less about an idea and more about doing. It’s an action, one I must be constantly mindful of and vigilant about doing moment to moment. My past thinking is so ingrained, changing that thinking is something I must work hard at all the time. First I must become aware that I have ingrained thinking that is not presuming in my child’s competence, second, I must accept that my ingrained thinking is unhelpful and hurts my child, and third slowly, slowly work to do, and think about, things differently.
I’ve written about presuming competence ‘here‘, ‘here‘, ‘here‘ and ‘here,’ but I will just add that this is very much something I continually struggle to do better. To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do. It requires actively ignoring the more common thinking about autism and what that neurology means. It means actively questioning everything I am told by people who present themselves as experts. It means listening, really listening to my daughter. It means sitting with the discomfort that I have done so much of this wrong. It means forgiving myself for my mistakes. This is the path I find myself on at present.
And truthfully it is Emma who is leading the way, my job is to follow, listen, learn and cheer her on.
Agree with everything…we also got our diagnosis in 2004…it’s been a long road. I’ll never forget telling his “people” that I wanted college readiness to be an option if he wanted it – in like 2008 – and the pitying look given in reply. And how I had no idea how to respond to that wall of resistance….
How wonderful it is that in 2008 you were believing college a possibility and believing this may well be a goal your child might have. Good for you and good for you for not listening to those who would have had you believe otherwise.
Ugh, that’s…I just can’t believe the ignorance on the part of professionals sometimes.
That skill development in autistic people is unpredictable by its very nature and someone’s capabilities at 6 don’t mean anything for their capabilities at 18. That autistic people have *always* been going to college; we were just doing it without a diagnosis or any protection from the ADA or formal supports or accommodations. That a lot of Leo Kanner’s original subjects actually went to college. I always hesitate to bring up Temple Grandin, but it’s not like she’s alone in this regard….Stephen Shore is a college graduate; Carly Fleischmann is in college now. And none of those people were considered “high-functioning” as children.
erebusetnox….I feel you on this one. My son is 5 and was diagnosed in 2010. He’s in K4 right now and I haven’t said a thing about high school, but I fully expect that he will earn a regular diploma. Not a modified type one. A real one. Like the one everyone assumes his younger sister will get. But I am hesitant to say a word because I am afraid of the looks I might get. Even though his school is awesome. And they think that he is intelligent. I’m still afraid of the look.
i couldny agree with you more. i have a 13 yearold nonverbal boy. we tortured him and ourselves trying to fix him. how i regret it all.
I so appreciate this post. In a way we were blessed (oddly enough) by the fact that we are low-income. Nobody really expected us to do much because we frankly couldn’t afford it. Also, we had 2 older children. If anything was suggested I’d use this rule of thumb “would I have done that to the 2 olders when they were 2” if the answers was no, we’d move on. Always saw Sophie as just one of our four children and really she lives just like her siblings do- park, outside, lots of playgroups, nursery school (except hers has therapy- ot, music,etc). The only thing I’m doing differently is teaching her to communicate (we are using aac). It’s mainly because of Emma and her words I decided sophie needs a voice- now. She is doing really well, and I credit your blog for giving me a head start- so thank you- and for your honesty too.
Really love getting comments like this one… love that you are doing things differently, it lessens the sting of regret that dogs me…
thank you, I had to go bankrupt last year.
Loss of income and therapy costs. I blame myself for listening to therapists and responding to the urgency in their voices… we need to do it now while she is so young NOW< NOW< NOW…
It is sooo disheartening that so much misinformation and bad assumptions were still being presented as fact in 2004…and are still being now.
Having gotten myself educated about autism relatively quickly, it’s just stunning to me what some professionals actually still believe.
Yup, I agree. In some ways I live in a little bubble, despite being in a massive metropolitan city. But whenever I’m confronted with places, schools or other settings where my thinking isn’t even considered radical because it hasn’t been considered at all, I am filled with such sadness. We have a long, long way to go…
Oh, yes. The bubble. I completely understand what you are saying about this.
“To peel back the layers and layers of misinformation and assumptions that get in the way of being completely present in a way that is nonjudgmental and most helpful to my daughter so that she can flourish is not easy, but it is the single best thing I have strived to do. It requires actively ignoring the more common thinking about autism and what that neurology means. It means actively questioning everything I am told by people who present themselves as experts. It means listening, really listening to my daughter.”
I find myself with less and less time to comment on blogs lately, but this post stood out so much to me, I just felt compelled to respond.
This is quote is simply beautiful. I applaud your bravery, your strength, your compassion, and your open-mindedness. And of course, I applaud Emma.
Thanks so much Melanie!
There are moments when I am very god we live in darkest Africa…. No information is better than misinformation!! The only thing we had available was OT…. And that was when Zack was 6. Before that it was just me. Hard as that was, with no one to tell me what I “should” have been doing….. We just got on as best we could. I am very glad of that now…. Although I do wonder what would have been different if I had found the OT a few years earlier.
I have wondered throughout this whole process with my nonverbal son if we should just quit it all. I KNOW early intervention is best but there has to come a point when enough is enough. The stress and worry from these evaluations turns my son and I into different people. Last year I decided to stop it all and start fresh. We are now in OT and ST and I feel so much better. Eventually the weight was going to kill me. Now I focus on loving my son. We encourage him and play and teach. It’s a much better place to be. As usual, your post touched me. Thank you
I have come to see “early intervention” as one of those terms that is very misleading, causing many people (like me) to feel tremendous fear, panic and the reason for boot camp like “therapeutic programs” that not only did not help my daughter, but actually caused harm. Had we concentrated on things that might have helped rather than drilling her on things that she knew but could not express in the way we were demanding her to, all of our lives would have been more relaxed, less stressful and upsetting.
Well you already know things I read here and in links gave myself and my E a headstart at 2 1/2-3…still up in the air about communication method (between rpm, aac, and just regular typing) but the kid’s only 4 lol and manages to boss us around anyway.
I am using Prologue version 3 application for IPAD to talk about things my 4 years old does like or doesnt like. Its like being in the candy shop. Just find out she doesnt like dolls and barbies. 🙂
my daughter doesn’t have enough language yet ( but fingers cross for the future) to talk to me about her likes/dont likes
Marina – I have no idea if your daughter is like mine, but when I stopped seeing spoken language as the holy grail and the barometer by which success was gauged, we were all much better off. We are so grateful to have found a way that she can converse and express herself through writing. Is that what you meant when you wrote, “… doesn’t have enough language yet…”? I just remember all those years when we insisted she answer us by speaking and it never occurred to me that what she was saying by speaking was not representative of her thoughts.
thank you Ariane,
this discovery is very big for me and to get it confirmed from someone with older child is absolutely priceless.
It had happened by chance we were travelling home by train and we were in the middle of another meltdown so I opened the app just to get my daughters attention away from her drama. It worked. I typed my sentence on the screen and to my huge surprise my daughter had typed back ” I like balls pit I dont like doll”. I thought that may be her typing was pure chance (you just need to select some pictures to form a sentence on the screen) but when we got home she typed “I dont like barbie”.
I can understand the message “I like balls pit” because Lily’s favourite video on youtube is anything about marbles race but I had no idea about her dislike of dolls. Lily can talk in VERY simple sentences but she is unable to talk about herself yet.
“But the kid’s only 4 and manages to boss us around anyway.” Ha! Love that!
Hes a stubborn little tyrant lol id much prefer communication methods but he prefers dragging us around the house and pointing our hands to what he wants…he’ll take you to the fridge then grab out what he wants, lay in the floor if he wants changed etc. he’s usually pretty good about using his AAC at least for food but this week hes got an ear infection so hes kind of avoided it and I’ve let him as the pain has him more unfocused and agitated than normal…dont want to add to it.
Thanks for this Arianne. I know that I would have done so much differently had I known. Thank goodness for the adults on the spectrum that showed me a different path – if only I would have met them earlier. It made all the difference.
Yup, me too…
Ariane, thank you so much for taking the time to write this. It is an enormous relief to hear these words. I have made some big mistakes in regards to therapy but I’m really trying now to trust my instincts about what to do next and what you have suggested here makes a lot of sense to me.
I am beginning to understand through Emma’s words that the Autism expert that I have spent countless hours searching for is sitting in my living room!
Thank you for being so honest here. For the first time in what seems like forever I feel like there is hope.
“I am beginning to understand through Emma’s words that the Autism expert that I have spent countless hours searching for is sitting in my living room!” – Love this! I wish I’d known this immediately too!!
In Australia the Government funds $8,000 towards therapy for a child under the age of 8 diagnosed with autism. A lot of people feel blessed, but I found it almost created the pressure of feeling obliged to use all those funds and a flurry of new practitioners charging exorbitant rates. I was told it was $200 for a consultation under the scheme but once he was 8 and I was paying privately they would reduce it to $100! I was quite strategic in deciding if and where we used the funds, and ended up with just OT.
Wow! The difference here in the US is that typically the practitioners don’t reduce their rates for individuals and each state determines what they will pay for and the age they stop.
Ariane, thank you so much for this. My son Leo was diagnosed at 2 and is still only 3 so we are still right at the start. I always felt something was not right about what we were being told, but I accepted this was just part of my denial and that the professionals knew my son better than I did. I couldn’t live like that for very long, and very quickly I turned back, took a deep breath, and started all over again. I have met many other parents of autistic children and none of them has the same approach as me so your blog has been a lifeline in the moments when I doubt myself and Leo.
The joy and unconditional love that I felt when he was born has returned. Not that it was ever really gone; but it was certainly in danger of being obscured by the need to ‘help’ him in ways that did not presume competence or take account of who he is.
Interesting that OT is the one therapy you would keep – I was heading towards the same conclusion myself.
Amy – I remember those early years well when I kept thinking – but why isn’t loving her, sitting quietly together, honoring her feelings and experience of the world deemed, at least as important as all this therapy?
i am thinking of print this message out and post it on the wall so I can always have it in front of me:
“when I stopped seeing spoken language as the holy grail and the barometer by which success was gauged, we were all much better off.”
Thank you for your post and for sharing what you’ve learned from your experiences. I started a program of arts education for people with special needs five years ago and have seen the power of the arts at work first hand. While I am not a parent of a child with autism, I know and love so many people and their families and through the organization I founded, I’m working to open doors in my community. I will be reading each post and am just starting go to back through your archives to check out all you’ve posted. My daughter is 24, is working at my organization and is also an Emma! I look forward to learning from you and your insightful reading!
Thank you for this post! I’m so curious about my silent 2yr old boy – does he want to communicate with me? Is it too hard or am I just not asking the right questions? I wonder what Emma thinks – does she recall being 2 and aware of non-verbal-ness? What does she think would’ve helped her then? Such a mysterious time!
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My son is 2 1/2 and was just diagnosed with autism in April. I’ve been studying this blog like it was the Bible every since then. Along with many others. The doctors, of course, are pushing for ABA, but I’ve read enough to know better. But the truth is, I’m so overwhelmed with so many “big picture” stories, successful outcomes, and what NOT to do, that I’m drowning and feel scattered and don’t know where to start. I’m searching for someone like you, who will say to me, “Do this ONE thing today.” to get me started in the right direction for my son. Then next week, “Now do this one thing.” until I’m able to see through the confusion and find the way for myself. I’ve no doubt my son is a genius. I suspected it all along, and now I’m convinced. Should I be giving him regular pre-school curriculum, such as ABCmouse.com, and just continue to pace through it, even if he cannot express that he understands it? How do I do this? I need a mentor!
Yes! Age appropriate materials and don’t worry if he cannot communicate in any way that you or others can recognize that he understands.
I completely relate to wanting someone to say – here, this is what you need to do – and have it actually BE the right thing to do. The problem is all kinds of people are happy to tell you what to do, and are even convinced that what you need to do is RIGHT, only it may or may not be.
This was one of the most frustrating things I encountered during those early years. All I can tell you is that it will and does get easier. Your boy is still so young and you are just at the beginning of this journey. But look at you, you’ve already figured out so much!
My advice – love that boy of yours for exactly who he is right at this moment, enjoy him just as he is, because it is all so fleeting and while we all make mistakes, there are quite a few that we really do not need to make. So, in other words, keep doing what you’re doing, because it sounds like you’re doing great!!
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