I speak with a researcher who says, “we need to hear the pain and needs of the parents of individuals affected by the disorder.” She goes on to say, “Nobody else can know better what the needs of the affected person are.” “Oh,” I say, “how about speaking with Autistic people?” Surely they know better than any what it’s like to have once been a child. The researcher tells me this is not their focus. I try to understand what I’m missing, what is the focus then? I ask more questions. I listen. As I listen I am aware of my heart. It feels louder, is that possible I find myself wondering. Can one’s heart actually beat harder? I decide this cannot be true. I’m upset. I know I become more aware of my heart when I’m upset. I try to listen to her words, but I’m not able to hear all of them. I know I’m missing some of what she’s saying. I concentrate harder. My throat constricts. My stomach tightens, my face feels warm.
I try to make a few helpful suggestions based on what I hear her saying. But she is not interested in suggestions. I try again. It is as though we are speaking two different languages. I cannot understand hers and she seems unable to understand mine. We are becoming exasperated with one another. I try to provide answers from my perspective, but this is not the focus of her research she tells me. The needs of Autistic people are not the focus. I feel some confusion. How is this research? How can one do research if the questions are already skewed? Isn’t research supposed to be unbiased? Isn’t the point of research to learn more, to understand? But we are trying to understand, she tells me.
We are circling each other with growing wariness. The conversation began one way and somewhere it took a turn. I’m trying to both back track to see where it changed from cordial, curious and open, to distrust, while also still listening and trying to understand what this research is meant for. My daughter is behind me. She drifts past where I’m sitting and stops. She is looking up toward the ceiling, her head slightly cocked to one side. I know she hears this conversation. I know she can feel my growing tension. “I’m just going to take this call into the other room,” I whisper to her. I go into the other room and shut the door. I don’t want my daughter exposed to more of this.
The constant barrage of words – Disorder. Pain. Afflicted. These are the words the researcher uses. These are the words, like a never-ending eddy threatening to pull my daughter down. I once used these words too. I once said things to others in front of her. “You walk forward and not backward,” Emma wrote the other day. Just before that she’d written, “…regrets are not needed.” I owe this to her. I must move forward and not backward. Regret, like those words, pull me down. I have made a commitment to become more aware of my regrets and to not allow them to keep me stuck.
I become aware of the researchers voice again. She really wants to know, she says, about the pain. And I lose my patience. I tell her no one would dream of asking me this question regarding my non autistic child. I tell her that if she is interested in understanding Autistic children, she should ask Autistic adults to describe what it was like. She says, “Well, if you’d like us to speak to your daughter we can certainly do that too.” But that isn’t what I suggested.
My exasperation with her has now crossed over into anger. She compares autism to Parkinsons and I’m furious. “Let’s not do this,” I say. We are practically competing with each other as to who can hang up faster. I am madly hitting the red button on my phone to hang up, but it won’t disconnect. This would be comical if I weren’t so upset. I have a moment when I see the humor, but it’s fleeting. I remind myself to come back to this feeling. Finally I stand there looking at my phone and I feel utterly defeated. This was an opportunity to offer another point of view and I failed. Miserably. I go out into the other room, where Emma is listening to music and dancing. I watch her, marveling at her beauty, her grace, her joy. In contrast, I’m a churning mess of anger, indignation, sadness and upset.
“We are interested in the needs of the parents,” the researcher said. More accurate information, unbiased research, questions that are not skewed to get a particular response, training that would have helped us support my daughter to communicate through typing at an early age, removing the emphasis on spoken language, abandoning functioning labels, showing me that my neurology has deficits too, that we have devised a society skewed to accommodate non autistics who use spoken language to communicate and how that benefits those of us who speak and aren’t Autistic, but hurts those who are, helping me understand that we have set up our schools to segregate a population that should be included and not excluded. My needs? Change the way autism is viewed and spoken of and my needs will dramatically decrease. Help me navigate parenting an Autistic child by giving me access to Autistic people and culture. Show me others who are parenting with love, compassion and complete and utter respect for their child. Most of these are things I’ve found for myself, but what a wonderful difference this would have made earlier.
Emma's Hope Book 
YOU didn’t fail. She was locked in to what she WANTED to research and not to what she NEEDED to research. Thank you for writing this – hopefully some who research will read it and HEAR it and go where the information actually is.
It was depressing as she has received a sizable grant for her research and I worry that the people who will speak with her are going to be asked questions in such a way that their answers will be skewed to support more of the same “tragedy” talk.
I’m posting a discussion question and a link to this on some of the autism groups I belong to on Linkedin. The gist is going to be asking how we can change the paradigm and why do we do this – not us 😉 but the general we that keeps missing the point.
I’m interested to hear what transpires.
Also, this researcher told me she was interested in developing something that would be helpful and this was the point of her research… One would think that what helps our children would therefore help us, the parents… but now I’m wondering if others do not agree.
The two things that helped us more than anything else were, learning from Autistic adults, finding their community and realizing that our child, who cannot carry on a spoken conversation with us, was far more capable than anyone suggested. Neither of those things were part of “early intervention” nor did they come from the various doctors we spent a fortune consulting.
It’s so frustrating and it doesn’t help parents to be locked in this concept of autism as pain and suffering for THEM.
Also, I don’t know why they won’t listen to autistic people. It depresses me. I was arguing with someone over the whole vaccines cause autism thing and she kept up with the same stereotypes even using my neurology against much WHICH I DO NOT LIKE! URG. Maybe people can be reached. If you hammer it into their heads enough, maybe they will see and change…
I doubt it though. The stereotypes and images of AUTISM DOOM are so much louder then the concept of hope.
It is depressing. It left me very sad and shaken. 😦
Ugh, that sounds really awful 😦 Keep fighting the good fight!
Thank you.
Ugh I hear you…sometimes I feel like I’m banging my head against a brick wall…ok most of the time I feel that way. And in some tiny way I understand what autistics live every day. I know in my mind, in my soul, what is right, what I believe, but I cannot seem to find the words to make it understood, sometimes words fail completely. This correlation is just coming to me as I write…God, to feel so defeated, like a failure, because the words are lost, or not understood, or words dont properly explain…to feel this way in almost every situation…autistic ppl must be super humans.
It is really, really frustrating to say something only to feel the person completely misunderstood or just cannot understand.
This reminds me of an exchange many years ago. I was still teaching at the time and mentioned to a parent of one of my students that I was going to be talking to a community group about my experiences with autism. Without missing a beat, she passionately said to me, “Well, tell them these kids are SICK!” It was such a disconnect for me that I was totally speechless – and in retrospect I too missed an opportunity to (perhaps!) make a difference. Your blog is definitely having a positive impact. Keep up the great work!
That much bias cannot be defeated. Loved your last paragraph especially, thank you!
😦
But thank you for the kind words…
It’s so disheartening. There is so much research that needs doing–on barriers to communication, on daily living needs–and this is still how so much of the scientific world thinks about autism. And this research is being paid for by somebody, and all of that funding is *not* going to real help for autistic people.
Sometimes I don’t even know where hope lies for changing outlooks, when established voices are so entrenched in this kind of thinking, except to keep slowly changing the outlook of parents and individuals until the research world makes itself a laughingstock with studies like this.
Yes. Exactly! So much research is desperately needed… to name just one – research that would help us figure out exactly what is happening for kids who type to communicate and help them access typing more easily and with increasingly less supports. Where’s the research for that?
Fill in the punchline!
An autism researcher walks into a bar…
OK see below 🙂
and the bartender says, “What’ll it be?” The researcher reaches for a pen and piece of paper and says, “Do you know anyone with autism?” The bartender says, “Well, yes, actually. I’m Autistic.” The researcher looks around thoughtfully and says, “Anyone else I can speak to? And I’ll take a club soda with lime while I wait.”
Lololol!!!
…and the bar falls down. But instead of saying “excuse me,” as polite folk do when they topple others, the researcher diagnoses the bar as noncompliant for standing in the way of progress.
😱. Oh Ibby how I love this! I love you. And we MUST continue our project together. Seriously. We must!!
You are a parent and you told her what you needed and still she did not care. This is not a good researcher, but sadly, a “good soldier.” You did everything you possibly could. Love love love, Ib
((((Ibby)))) You’ve brightened my day by just commenting here!
Excellent! You are so right that “autism research” must be done from the perspective of persons with autism. I think I am trying to arrange such research but I am not yet ready to have a public discussion. Since we have been in contact before, I will try to send you a private email soon about my current efforts.
An autism researcher walks into a bar, and looks around, contempt increasing in the sneer on her face as she sees she’s walked into the wrong kind of establishment.
“Look here,” she says to the bartender: “I’m studying carwashes, and I’m well-funded. Either you grab a sponge and bucket and see to my Lexus, or I’ll find a way to have my friends in the government shut you down.”
hahahaha! Knew you’d be take the lead with this Ibby!
Hahahaha!!
Hope and a positive attitude are always helpful. You did your best. It sounds like the researcher wanted you to complain so she could reinforce her own belief that living with autism is all bad news. Thank you for the hope you’re family offers to all of us.
Thank you for the kind words, Marie.
Have you spoken to someone who can document your journey visually? I really feel like this is important as part of you telling your truth and the truth of many others. Seriously, what you are doing is ground breaking and it sounds like that researcher had certain parameters and was not willing to listen for whatever reason. Don’t let that deter you! Keep plugging away Arianne! You are doing great things.
Liz I agree. A movie. That’s the most powerful way to get the message out there. This autism is not what we thought it was – at least for a substantial portion of kids. Ariane – your family’s transformation began Wretches and Jabberers and Youtubes of facilitated communication. Yep.
Thanks so much Liz. We actually have been contacted by a few different people, but must wait to see if either or both will actually happen before we can say more and Emma will want to be the one to talk about it, I think…
Infuriating! Why do they think that by labeling our parenting experience as unfortunate and miserable they are offering us “support”? NOT constructive in the least. Instead, offer information and supports to help our children communicate (and then Listen to them) and BOTH parent & child’s experiences improve dramatically…it opens up a whole new world!
“Instead, offer information and supports to help our children communicate (and then Listen to them) and BOTH parent & child’s experiences improve dramatically…it opens up a whole new world!”
It really is this that has changed absolutely everything for all of us.
Same here! I have no patience for poor-me-parents and teachers who won’t take the time to give their kids a voice now that I know how it CAN be….especially for the child!
What will help parents of autistic children is a better understanding of their child’s capabilities. Over the last few years we have been shocked to learn that many (probably most) of these children are far far far more in tact and capable than we realized. We have been shocked and saddened to learn we have over focused on language and speech to the detriment of all. Hence what will help parents is a clearer understanding.
YES! This. Completely. THIS!
Ariane,
I know this story… thank you for putting it to words so eloquently.
Gawd – I adore you!
Solidarity and love ❤
Aw… ((((Leah))))
Sadly, when someone has a hammer, the world looks like a nail …
Ha! I’d not heard that expression before!
I can only hope I parent someday with a fraction of the will to learn that you have, Ariane. I don’t know if my future children will be autistic or not, but I know I will need that willingness to learn and grow with them.
Oh Ann, what a nice thing to say. I would love to say this came easily to me, but it didn’t. Definitely a work in progress!
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applause!!! You did amazing, you can only get so far with someone who isn’t willing to open their mind to what it is they aren’t doing right. I am SO glad to have you out there fighting the good fight Ariane. But I hate to use the word fight, really, because isn’t it truly about loving everyone and respecting them regardless of ability?! My kids are jumping for joy (inside) for doors that you are opening up for them. ❤
Bird, I hope that’s true… the opening doors part… 🙂
Wow! You are 15 years my junior and I so wish you were my mother! Emma is so amazing and will always be. Sure, it’s Emma being Emma, but you and your husband need to take some credit for allowing and encouraging her to be herself.[ that is so rare]
Vicky – that is such a lovely thing to say. Emma makes it pretty easy to encourage her! When we gave our presentation earlier this month, Emma coached the entire audience to clap after she wrote anything. She had them trained in no time!
You are so spot on. All of us can contribute to change the conversation on autism by focussing on “I Can”. I terminate any conversation with professionals, when they start on any negatives. It really is irrelevant for all of us, to keep focusing on what we can’t do. I could fill a million buildings,a million storeys high, a million miles wide with what I can’t do. But I lead a very fulfilling life. So, Ariane, keep up presuming competence and your unswerving commitment to unconditional acceptance to strengthen all of us.
Aw… thank you so much for the encouragement, Emmy
I think the problem is that researchers are trying to eradicate autism along with all autistic people. Like they’re lepers. My son is great. The researchers don’t want to hear autistic voices because they might hear wisdom, hope and love.
Honestly I’m not sure what she wanted or why. Really. I left that conversation, baffled. It was one of the strangest conversations I’ve had…
I hope you’re wrong, though I know you are correct, at least with a great many, that is the focus.
There were no missed opportunities here. You did EVERYTHING you could – you are not a failure because an opportunity didn’t arise. You presented the different view and she refused to listen or take it in. The only opportunity she provided you was the opportunity to get frustrated and upset…. which is not your fault either.
You’re right… no one would ask me about my neurotypical son’s “pain” – but they would ask my mother about mine… and like you my mother would likely try to refer them to an autistic person or aspie person. Only – they’d ask just as loaded questions with them as with the NT parents.
Loved your last paragraph, I hate how rare you are in the people that I’ve dealt with – especially NT parents/family members of autistics… there needs to be more like you. Much, much more… and with researchers like her – that’s only going to make it harder.
Keep going – you’re doing really great work.
Really appreciate this. Thank you.
Have I got the right blogpost? I have to hurry and get it down before I forget.
A researcher walks into a bar. He’s heard the bartender has a bottle of special elixir that will give him the one intellectual power he lacks, common sense.
“What can I do for you buddy?” the bartender asks.
“I’ve heard you’ve got a bottle of common sense. I would really like to have some, can you help me?” the researcher asks.
“Sure, buddy. But you know, the thing about that common sense is you have to drink the whole bottle before you can obtain it.”
“Might as well get started…” the researcher says.
He thinks he should be nearing the end of the bottle, he can hardly walk, and is worried if he has another, he will pass out on the floor. He gets up and heads home…and tells the bartender he’ll be back the next evening to finish it off.
This goes on for days and days, then weeks, then months, and then years, and the bottle of common sense is just as full as it was in the beginning.
“What the hell is going on?” the researcher asks.
“Shit. You finally woke up and my kid still has a year of college. Still, I think you’ve finally got it.”
Now, exchange the researchers ideas for a cure for an autistic child and the bartenders bottle of common sense… It’s the same game the bartender plays, only in reverse. Thousands of dollars spent before the parent wakes up…except the parent will -never- obtain the one thing he wants from the researcher.
Just shows to go, if you really want to help your child…you need common sense first. And if you want to keep ahead of the game, save your money. You have always had what you needed…you just needed to wake up.
(My dad was a bartender. He called bullshit a lot. I wish I’d had more of his sense.)
Love how you ended this – “(My dad was a bartender. He called bullshit a lot. I wish I’d had more of his sense.)”
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Thank you, Ariane, you’ve voiced my own frustrations so well. This is part of the reason why I have dedicated my own research to creating an embracing perspective, pushing for the paradigm shift that we – humanity as a whole, autistic and neurotypical and whatever else – so desperately need! Research is nothing if researchers do not learn to listen to the researched, to absorb the insights and perceive the whole from all facets.
I’m so glad to hear you are conducting your own research!
Thanks, Ariane. Yes, I am, as part of my Ph.D about autism, current perspectives in neuroscience, and art as agency, towards creating empathic spaces. 🙂
Reblogged this on bunnyhopscotch and commented:
This the problem with so much ‘research’ today.
This is a perfect explanation of why the perceptions about autism are so grim! The only experts I believe are the kids I see for RPM sessions. THEY are living happily with who they are. THEY should be providing the responses to researchers and directing future research!
I have a feeling sometimes that research into Autism is akin to religious dogma. The angle of research is set first and then evidence is found to support that angle no matter what. I thought science is about observation and information gathering without bias, but this seems very far from it to me. As you’ve said, the most accurate way to learn about Autism is to talk to Autistic people themselves. Don’t feel bad Ariane because you’re reaching the people who need to receive the message you send in your shared blog with Emma the most; Those surrounding the Autistic person! My daughter is someone bright and creative and lovely and I’m as proud of her as you are (quite rightly) of Emma. She thinks of the most unique and interesting ideas and our species needs this very badly and not the blinkered approach of “researchers”!!!
“I thought science is about observation and information gathering without bias…” Me too!
A U2 lyric just came to me in relation to the research. It comes from “11 O’clock, Tick Tock”…
“We thought that we had the answers. It was the questions we had wrong”!
Love this, Ariane!
Maybe it will be easier for people to put us to death if research can prove the pain we are causing all of humanity.
Not if I can help it, Judy. And Richard and I are happier now than we’ve ever been in our entire lives, together that totals more than 100 years! Our children and friends (like you) are the main reasons why!!!
Hi there,
I’m a PhD-student in the Study of Religions, and my research is about coping strategies in young people on the spectrum. I totally agree that the language used in research far too often depicts autism as a disorder, focusing on “deficits” and “deviance”, which is due to a neurotypical bias in researchers: too few people writing abou autism are non-autistic!
My aim is to work like an anthropologist, respecting the fact that I am non-autistic while trying to capture and present the life stories of my informants. I think that your reaction was wholesome for the researcher that you spoke to – it was not until I attended a conference with quite a few scientists on the spectrum that my eyes were truly opended to a new perspective on how to talk about autism, and how to talk TO people rather than talking ABOUT them.
PS: of course I mean that too MANY of those writing about autism are non-autistic…
I hadn’t know about this blog prior to this morning when I read this entry. I must admit, I felt a momen of bias precisely because of my past experience with well meaning advocates. But my fear was dashed when I read your call to ask autistics what we think of our experience. I thought, “She gets it!”
Thanks to all of you who not only take care of us but also speak out to hear our voices.
The researcher lacked doing some research prior to contacting you?
Why do people make so many assumptions about autism? Many of us are parents. Many of us are professionals and many are both. That researcher, but refusing to acknowledge our expertise, negates our very existence. I struggle with myself, wishing to know the contact details so that I can explain who I am and why I know from the inside about a different aspect of autism and parenting. Then I struggle with knowing that to tangle with this kind of prejudice is purely self injury. Some people invest so much in the myths they propogate that they cannot and do not want to see the truth. Then I think, but I have a duty to tell her. She can choose to listen or not. AAAAAAAAAAAaargh. There is so much pain in being ignored.
Since she contacted me hoping that I would spread the word, I see no reason why I cannot share her contact information for any of you who are interested.
Elizabeth Torres
Ebtorres@rci.rutgers.edu
732-208-3158
Hi Ariane, this came across my facebook page through Amy Sequenzia’s, and it’s – well – REALLY excellent. I didn’t know where else to post it for you to see/share.
http://karlamclaren.com/research-based-approaches-to-autistic-ways-of-learning/
I’m looking forward to digging into the info she cites. The approach to the research is a breath of fresh air.
Totally loving the opportunity to let the researcher know what parents want – more info from the autistic point of view. Thanks!
I felt my frustration and anger grow to seething levels on your behalf as I continued to read down the page. Autism is an industry now, with armies of so-called professionals making very decent livings from it. They don’t want the real experts, families like ours, to get in on the action. We get marginalised from those being funded in the name of autism, in exactly the same way we get marginalised from mainstream society. I’ve shared this article on The Special Parent’s Handbook Facebook page, thank you for sharing your thoughts and experiences with us.