Yesterday I wrote a post, Your Child’s Been Diagnosed. Now What? There are so many things to add. But something I wondered often during those early years was – what good is a diagnosis if the “interventions” the professionals suggest and say will help, do not? Now this is not everyone’s story, but it is ours. All the recommended “interventions” did little, if anything, to actually help her. In fact, I would argue that some of the interventions we agreed to, actually harmed her self-esteem. And the general rhetoric, disguised as factual information, surrounding autism, encouraged her to feel damaged and at fault for the suffering of others. No child should feel they are the cause of other’s pain and suffering. And yet, so many do.
Once we began looking for schools that might be a good fit, we were even more horrified. The choices were not – which one is best? – but became – which one will not harm her? This shouldn’t be a parent’s guiding question when looking at schools, but for us, it was. Will the staff be kind to her? Will they be patient? Questions like – will she learn? Will she be taught science, math, english, social studies? Those questions quickly gave way to – will she be harmed? Are cameras monitoring what goes on in the classrooms and hallways? Do they use isolation rooms? Do they allow teachers to use restraints? The best case scenario became less about education and more about physical safety and finding a place that did not harm or try to force compliance.
Academics were stripped down as it was “shown” that she could not understand basic concepts. Because she could not read aloud, she was given picture books. Because she could not answer the questions asked, the questions were simplified and simplified more and more and more until it was concluded she didn’t understand. Because it was determined she could not understand a simple story about a boy and his dog going on a trip to visit his Grandmother, she was given less “complex” stories. She was given “sight” words that were repeated for months and months, even years. Billy Goat’s Gruff became the center piece for a curriculum that continued for three years, despite our disbelief and protests. “Oh but we examine all the various characters in the story,” we were assured. “THREE YEARS??” we responded. “For three years?” “Yes,” we were told with pitying looks and the hubris and bravado I’ve come to recognize from those who are convinced they “know” and understand “autism” and therefore my daughter.
Some of the worst offenders are those who have dedicated their lives to autism. Those who are so sure they know, and as a result are no longer curious or interested in learning more. Those are the people who are asked to give presentations at Autism Conferences, they are the ones who write books, that parents, not knowing any better, buy. They are the ones we listen to and slowly as their voices are the loudest and most plentiful, we begin to doubt our instincts, we begin to soften our protests, we begin, slowly, slowly over time, to believe them. Our ideas about our child are whittled away. Our instincts are pushed aside to allow for those who know better, who have been doing this for “twenty years,” who have worked with “this population” and who, from having spent decades among children just like mine, know things I cannot possibly grasp or understand. (This, by no means, describes everyone, but it does accurately describe a great many, and sadly, often those who were in a position with the most power.)
We parents are told to see our children for what they are: Intellectually impaired, socially inept, incapable, lacking and unable to understand the most basic concepts. My child, as a result was shuttled off to learn how to tie her shoe laces and wash her face and hands. While life skills are certainly important they should not take the place of academics. So many of us are consoled with the idea that at least our child will be able to dress themselves, or not… in which case we envy those parents who have children who can. Our focus turns from philosophy, an exchange of ideas, history, english, poetry, literature, science, social studies, math and geography, to making sure our child can brush their teeth. Until one is accomplished, it is thought, the other cannot be introduced. A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.
“Hey Emma, I’m curious, how is it that you know about WWII and Nazi Germany?”
“I hear you, Nic, and Daddy discussing,” Emma wrote over the weekend.
“Do you think it was right for Harry Truman to drop the bomb on Hiroshima?” my son asked.
“I have to learn more to say one way or the other,” Emma responded.
“Do you want to hear some arguments for and against the bombing of Nagasaki and Hiroshima?” N. asked.
“Yes, I can better understand using the bomb if you tell me more,” Emma wrote.
There is so much more to say…
Emma struck this pose while waiting for the school bus – May, 2014
Emma's Hope Book 
I will never forget my son’s school psychologist, after watching him fly through sight words with me, turned and asked “Really, Mrs. Callahan, where do you think he’s going with this?”. And another teacher who constantly cautioned against ‘false hope’. I apologize to my son every day….and then we start reading.
Did you see the thing Emma wrote about false hope? It was so great, she wrote, ““They say hope is cruel for the hopeless, but maybe they are the cruel ones.”
As you know, because I’ve written this before, every day that I’m alive is a day that I make a living amends to my daughter.
Having seen pretty horrible errors made by experts over the years when I did respite care and further back in my own life I have this crazy false hope myself. That is rather than allowing experts to narrow down what is possible for any given kid pretty short into their life span people presume incompetence on the part of experts until proven otherwise.
It shouldn’t be up to people operating at a communication disadvantage to get people to notice hey I am smart and to keep combating the worlds view on them. Those experts many who have based on the errors I have seen made forgotten some of the fundamentals of the field they claim expertise in well they should have to prove they can be a decent expert.
In my own life I have people running around making life altering decisions who cannot be bothered to read what has already been said about my autism. There is nothing to be done. They cannot be combated with logic as they have none to appeal to.
It puts me at great risk as they do not care what they do not know at all even if the one advantage that having lived so long and having an education in psychology should have is most of the garbage has been culled from my chart and useful things exist for most of the ways people could fail but if reading those things is too much for them I rather suspect education was wasted on them not the legions of kids who fail to demonstrate competence in some unrelated way and are thus robbed of a proper education.
I had been foolish enough to think it never could come to this again but some of the fear parents of people with disabilities have is justified. Not if they let it form decisions that will not be good overall but always being aware that to some degree there is a vulnerability to being disabled that aging doesn’t alter. No matter how competent you are at some things short of mastering everything that vulnerability is always a risk.
You’ve made me dust-down a question I’ve long asked myself Gareeth: namely, ‘why would anyone view another person in terms of incompetence’ (or deficits or impairments).
I’ve long asked myself that question: firstly, because its not something I do myself (I’m reflexively over-awed by the vast wonder of who and what each and every other person is); secondly, because it seems to me that others do sometimes deal with me in terms of seeing me as incompetent or impaired.
I find that my mind/brain, which I see as crucially autistic, is stimulated to plastically expand to affirm the others I encounter. I don’t start of with an identity and position to defend, I’ll become anybody and anything to enjoy the other. So I don’t begin with personal experience to understand others who end seeing others in terms of incompetence and impairment. My troubles then beginning when others challenge me on who and what I have become to empathetically affirm the other; some being minded to deem me incompetent for what I do in that.
I get some way to understanding what is involved in others seeing yet others in terms of their presumed incompetence, by thinking that others have come to a somewhat given identity and sense of the world, across the limiting effect of buying into what is social and societal and cultural. When you get to the end of who you thereby are, and an other person lies beyond and outwith who you find yourself to be, then it appears that this outlying other is audited in terms of all the ways in which they are not you, and these ways are deemed deficits and impairments, and the other person is deemed incompetent because they do not do as you do.
So seeing the other as incompetent and impaired and in deficit, seems to involve a choice to not-travel towards the outlying other, to not empathise with and share in what being and living is for them. Maybe that becomes a use-it-or-lose-it capacity: so after a period of getting to a boundary and horizon of being, and deeming those beyond that horizon as impaired and in-deficit and incompetent, you lose the capacity to see or pass beyond that boundary or horizon.
Presuming competence then lying at the heart of a vast public-health project and process, where we are setting out to press beyond a limiting boundary and horizon.
I have no clue why people struggle with this. I was always treated like I was some sort of radical rebel for thinking my clients understood more and could do more than any others had tried,
The real heart-breaking issue though when it comes to presuming competence and use it or lose it is not for the experts who feel they can say all sorts of junk about what a kid will or will not do based on very little but that if everyone in those kids believes it and no one rebels the amount of stimulation they get drifts down to the appalling. They then are at risk of filling the expectations people have if years and years of sitting with nothing to do or any of the usual interactions you have with a child. It breaks my heart even now when I think back on kids who were approaching puberty and every dumb thing said about what they understood had been believed and you had to wonder how much more could have been achieved it if it had been challenged sooner.
The other thing that got to me is I know they are actually taught better when it comes to child psychologists having been taught the very things that made me rebel in similar classes the people putting hard caps on what the barely born would ever do so I never understood it but it is an ongoing tragedy as systems don’t like someone saying I think this is wrong on the whole and many people suspecting it is won’t say it is. The minds lost not to their disability but to the failure to presume any competence at all is chilling to me.
Until one is accomplished, it is thought, the other cannot be introduced. A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.
This is why I got no training in composition and writing until I was in high school. And then, only because a teacher realized that cursive was a lost cause with me and decided that everyone would be better served if we choose not to continue battling for me to learn a skill that is very rapidly becoming obsolete.
We need to destroy this idea that everyone must develop in the same order. We need to destroy the notion that there is a “right” way to pick up skills, and that it’s how “everyone” learns. I have never seen someone benefit from having their education obstructed in Skill A because they’ve yet to achieve Unrelated Milestone B. It didn’t help me learn to write better, it didn’t help my sister get better at math, it didn’t help my cousin learn to read faster, it didn’t help another cousin of mine learn how to move more effectively and so on and so forth. Nobody I have ever met has ever benefited from having one or more aspects of their education held hostage until they stubborn their way past a disability. Not. One. Single. Person.
But a boatload of us have been harmed by it.
Some people develop very asymmetrically. And some people just have huge troubles with certain things. In fact, if batting was a skill they chose to base what someone is exposed to for phys ed, I might still be training on hitting the ball in baseball and never would’ve learned how to swim or lift weights properly or do martial arts (all of which I enjoy and do regularly). Everyone seems to recognize that different people have different physical talents and we shouldn’t assess the whole of a person’s physical prowess by how powerful and accurate they are at bat.
So why do we do that with academics?!
Yup. This is one of those things that is my TOP 3 things that I wish the “experts” would get about autism…that, for instance, not being able to tie your shoes or feed yourself or demonstrate any other “basic” skills, has literally nothing to do with whether someone can understand or learn literally *anything* else. The skills are unrelated. People do better when allowed to develop their strengths. Weaknesses will often follow along when strengths are supported. Our skills aren’t tied together in the same way or same order that typical people’s are.
It has to change. It absolutely has to change. Emma has told me she sees kids at her school and she knows they know more than is assumed…
what i really really really don’t get is why they don’t just ask the other Emmas what the kids are capable of….
it’s not so hard to see…
I never had the courage to get to know the special ed routine because the teachers and aides terrified and horrified me, and it was already so hard trying to fit into the education culture to try to protect my own child from the shaming of being different…
(I am a Ph.D. scientist, national speaker, and STEM advocate.)
Reblogged this on Al Kutil — Daily Life with Asperger's and commented:
This is the reality for far too many parents who have a child on the Spectrum. Please contact your representatives while they are debating the continued funding for the Combating Autism Act. Also consider doing a Google Search on this Act and letting them know in no uncertain terms that they MUST do better!
A child who cannot dress themselves, surely cannot be introduced to Kant or Socrates or a poem by Yeats.
This reminds me of a blog i read (and since its author might likely read this i apologize i cant remember who it was) of autistics tendency towards non-linear development. This person described being an adult…who had been driving for years…who finally put the steps together to blow their nose. The professionals call them “splinter skills” but whatever name you put on them, i hardly think that my child who is academically above his peers will be failed out of school because he still has not met one of his original EI goals to wave bye bye lol.
(On a side note i have no clue why but I get emails and see your posts on fb LONG before it shows up in my reader on the app grr)
I gave up on reader…
I really hate that term “splinter skills”. Can you imagine having an interest in something and being good at it only to be told it’s a “splinter skill”? It’s reductive and it’s condescending.
BTW – That post you referred to sounds familiar but I can’t think where I saw it…
I started my psychology degree and 1986 Reductive and condescending with doses of material that made you want to throw up was pretty much the order of the day.
Poor cub. She must have been so BORED out of her mind having to repeat such boring things. Urg. If I had to go through that I would have been snarling.
I think education should NOT be one sized fits all.
I would have been throwing myself against a brick wall…
Yes. That’s what kids do. And everyone asks why!
This is EXACTLY what I said to my husband this evening. EXACTLY!
Once again, the parallels to our experiences are incredible. This post comes at the precise moment in time when I’ve had enough. Enough of sight words, enough of being told she can’t move on to actual meaningful academics until she masters “proving” she knows them. Enough of being made to feel that I don’t know how to help my daughter because I haven’t “worked with autism” for years. Ugh.
My daughter is also 12 and resembles Emma so much and your story, ours. I appreciate your insight so very much Ariane. Thank you for all you do.
Hi Michelle… keeping you in my thoughts and hoping you’re able to get through to your school.
Thank you Thank you. Brent is 45 years old and been with my family since he was 14. I’ve been ‘doing this for 30 years’ professionally (yikes I’m old!) and feeling the way you feel the whole time… without knowing how to change things. And since he has been out of school and we have both been ‘in’ the adult system for over twenty years already, it is easier to put these issues way back in my mind and focus on helping him and other adult autistic people make adult life dreams happen. When I read your’s and Emma’s posts, I don’t know if I should cry, or jump up and down with joy and relief. I do both. You both articulate the issues perfectly! And now I spend my days with Brent trying to REALLY presume competence, because I have been assuming for years that I was already doing it, and I have not.
I really relate to this – “…trying to REALLY presume competence, because I have been assuming for years that I was already doing it, and I have not.” It just keeps unfolding and wait till you both see Soma. I so want an update!! You have to promise me you’ll give me an update.
absolutely, we can’t wait!
Juniper Hill Farms, I checked out your blog. It is amazing. It seems like you guys are having a lot of fun. I liked your holiday celebrations a lot. We have a 40 year old daughter with autism. She has the same anxiety over holidays and up coming happy events. Partly, the event is something to talk about that she has a spoken vocabulary for, and she uses it as a topic of conversation for weeks or even months beforehand. Also it is a disruption of the daily routine and for her that causes worry. She wants everything to go as planned and she worries that it might not. She also has a problem with time. If you say something is going to happen it needs to happen ASAP, and waiting is tough. Presuming competence is easier for me when I remember that mostly Katrina wants to interact and be included, and she is using the upcoming event as a way to do that.
Thanks Marie, we do have a blast here! Yes, Brent has a difficult time waiting also (we can’t even say the ‘W’ word here) but we have everything marked on charts (things that need to happen before the next big event) and calendars that he refers to constantly , he has an entire side of the fridge for his papers! Brent pretty much created these holiday traditions for himself and we are having a great time following through… we just finished his birthday week and he went to a different restaurant each day for lunch to hear them sing the birthday song… he has made that a tradition now!
Thank you. My son just turned 20. Diagnosed at 2 yrs. with “severe Autism,” I was told he would never feed himself, dress himself or speak. The Kaiser hospital “doctor” told me and my husband we would most likely end up institutionalizing our son. We didn’t accept that of course. Now he uses a computer, plays his keyboard, watches Youtube videos on his Kindle and spends probably way too much time with his iPod music. He speaks a few words, and is working on more. He rinses his plate after meals without prompting, wipes the toilet seat and closes it…..so many little things that it was assumed he would never be able to do. I’m still not able to crack the code of communication and know what he thinks or understands, but I will never allow myself to underestimate him. Keep on blogging, these are the things that the world needs to hear.
Thank you so much Cheryl. Blogging is a bit like brushing my teeth at this point. Feel a bit lost when I don’t post.
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That is where we are at right now. Risa is leaving the public school system and going to a private school in the fall. It is for kids with all kinds of disabilities, not just autism. My mother in law and I visited it last week. They’re actually in the process of moving, so it was hard to get a good impression with all the chaos. But the gist is that I think (hope) it will be a good fit for her.
This school has preschool through 12th grade, about 80 students in all. I saw no “isolation rooms”. The new building will have “sensory lounges” – an open space at the end of each hallway that includes sofas, beanbags, music, among other things. There are three therapy dogs there on the site. The students are divided up into “classrooms” depending on where they are at academically. Which means she could be in a class with a high school senior, a kindergardner, or anything in between.
We met all the teachers. Each student is assigned their own social workers, who help out in the classroom as well. The principal gave us the tour and knew everyone’s first name, and whatever current work they were doing. Most of the students were verbal and all very polite. Even the ones who didn’t talk would shake your hand, nod, or acknowledge you in some way. They are encouraged to bring “comfort” items from home.
It’s very different from her current school, where she has been doing the same curriculum since preschool. (Yes, I kid you not!) And while she DOES desperately need to learn life skills, that is not the only thing they focus on.
I am of course nervous about such a big change but who knows, maybe they will be the ones to find her a reliable method of communication.
We’ll be giving it a year, and seeing how it goes. I’ll for sure keep you updated!
Good luck Ang. Really hoping this is a good placement for Risa. So glad you’ll keep me updated!! ❤
Noah did full inclusion for 5 years. Then at age 11 we had to pull him out for homeschooling because he was grabbing a little at kids ‘inappropriately’ and the heavy wheels of the behavioral police were about to descend on him. His school did a lot of plays but he never got considered much for participation. Now he is going to blow their minds when he returns to his old school for their talent show and recites Yeats’ Stolen Child. We have the utmost respect for the Son-Rise Program which we began when Noah was 9. Everything they teach grows out of respect and acceptance for the child, and teaching parents how to really live that, and out of that comes a space where the child, for sure Noah, becomes open to all kinds of challenges, academic, social, artistic, sports that never would have happened if he had been stuck in a system that focused on his problem behaviors and was clueless about how to celebrate his many strengths.
I don’t know how exactly to word my comment without sounding rude, but I am going to try because I feel like this dialogue is so important. I apologize for the length. I could write pages… I LOVE your blog and I agree with what you write so much!! I work with autistic students on a daily basis and one thing that is becoming clear to me is the difficulty of tearing down neurotypical ideologies.
One of the largest hurdles for the kids that I work with is that they don’t seem to want to be there (wonder why!?!!). We have bolters, hair pullers, spitters, etc. ABA just makes them try again over and over and over.
What can teachers wait on and what can they try to help students improve upon right away? How should a student act in class? What is OK and what is not? Is it OK for them to feel a friend’s hair without permission, jump on tables and chairs, scream math facts at the tops of their lungs at people, etc? It is hard to teach a student in an environment where everything he does is considered wrong by nearly everyone else in the room. Ugh, at the same time, it is hard for any student to complete almost every subject in school where all of them require sitting still in a hard, uncomfortable chair.
Teachers hypothetically want students to be mainstreamed, but at the same time, they expect them all to act like standardized robots. I could care less if a 5 year old can look me in the eye, shake my hand, and say goodmorning! It’s 7:30 AM when they get off the bus. I don’t really want to say it most days, either. There are teachers, though…… who will think that not following through on social protocols is the rudest thing on the planet.
How has RPM helped Emma to not be so frustrated in general? Perhaps showing this will help educational professionals see that ABA is not effective because it’s actually causing the “behavior” it doesn’t want in the first place. Students cannot be who they want to be because they are expected to fit into a mold that is unachievable. I want to hear more stories about how believing and trusting in students improved their attitudes.
How DO we show educators that these students are intelligent and competent? I see one of my Kindergarten students board with picture books and want to help him, but I’m not 100% certain just how much he really gets because he can’t talk. It’s also frustrating to not have a clue where to begin.
It is hard for me, I admit, to have the courage to believe in students who cannot walk alone in the halls without bolting into classrooms. I want to provide them with support and encouragement, yet, people don’t know how to deal with the quirks and ticks.
Ah, and one more thing unrelated to all of this: Have you looked into Sudsbury? I visited one once and would LOVE to be in an environment like that one day!
Kids don’t do things randomly. Teaching them to behave appropriately should be way down the list of priorities over working out why they are behaving as they do to get anything sorted out at all.
As for your kindergarten students you don’t need him to show he gets it by talking. Think about it. People talk to newborns. We know they don’t get it and for sure they don’t talk yet we do often in more than one language as science supports that as being good for them right?
What possible harm can be done by assuming he will get it? Just begin there. Think about how you think about students with special needs who are children after all and how that contrasts with how children are thought of and treated.
We do not ask kids without a diagnosis to prove something over and over to the point they get bored with it so they attempt to make it interesting… Yet it never stops if you have a disability. You like to think it stops in childhood but it doesn’t.
Set the example. You don’t have anything to lose. It is after all kindergarten which is a chaotic and odd form of educational torture as it is.
My own teacher for the brief span I spent there was sure I was mentally retarded. I was equally as sure she would be in big trouble any moment now for letting things I was totally scandalized by go on in kindergarten. All those loud, noisy kids playing no less. If I could have channeled some indignant old British lady ( I wouldn’t have known it then but they do seem good at indignant compared to say a Canadian) I would have but I had no real way to describe the daily horrors of this fake school.
My teacher never really fairly looked at behaviour which should have suggested I couldn’t be mentally retarded. Not once even though the only bit at all recognizable as school was a short brush with phoenics it was the 70s and grading 5 year olds was not in style but she could have glanced once or even wondered if I was in fact as mentally retarded as she thought why was this and trying to get to books my only interests. But nope. She was sure.
Now what if I had been? Would it have been okay to keep me doing boring things forever that I hated to degrees where increasing numbers of adults would be needed to keep me contained?
I worked with kids most of whom had at least some degree of mental retardation but they were always helped by shooting well beyond the modest expectations of whomever set up the dictates of what they could learn anyway. Even if sometimes an ongoing process depressingly meant for some capacity was actually going down you didn’t just say oh well it’s a steady diet of the very boring for you young human…
Well some probably did but what would be the point? Or what would be the harm in just setting a good example for other people and being the one adult who doesn’t have to have what you can do proven beyond all reasonable doubt before any variation is offered up.
A kid can have a pretty substantial intellectual deficit and still not want the same darned story over and over or to stare at the same books,
Be a rebel. Decide it doesn’t matter one bit if he understands you or not or even if you ever know and just change it up. It is weird but that the same material too much causes any kid or adult to lose interest is fairly well understood and yet when faced with kids with challenges there is still some instinct to limit things.
A kid who may never read might still want to learn about magnets, or whatever random thing. It takes a fair bit of time to completely crush a child’s desire to learn things but schools manage it and it is not going to be cured by doubting the kid’s competence endlessly but not the brilliant educational minds that create such weird decisions is it?
Char, Children who are that anxious in a school setting need a guardian angel in the form of a one on one aide trained to work with that individual student. Very few school systems will pay for that. Getting some trained volunteers might work. Good Luck! Rattle some cages if you have the energy. One person can make a huge difference.
I think this is true for all differently-abled kids the so-called experts presume that kids who are different are incompetent and tell their parents not to expect much of them and as a result these kids end up not living up to their potential.
I have just adopted a fabulous little 8 year old girl. She was diagnosed with ASD after coming into foster care at age 5. I would love to know if there are certain programs or Apps that you or Emma would recommend to teach her to type. She can communicate somewhat verbally but I know she understands more than she can express with words. She also communicates through her amazing creative world which she shares with me.. a gift and a privilege. Thank you for this wonderful and insightful blog.
Hi Lisa,
We’ve used a number of different AAC apps such as assistive chat and proloquo2go. But the thing that has helped us more than anything is learning how to do RPM (rapid prompting method). That is what has changed everything!
Thank you for answering so quickly! A new topic for me to research.. thanks again!
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