Emma’s Ten Research Questions

* A note from Ariane:  What follows was the result of a discussion about people who say one thing, but actually do something else.  Emma then wrote a list of questions she would like to ask such people to make sure they were genuine.

Emma wrote that she’d like to do some research on “who is faking their love of autistic people.”  She proposed that there be a list of questions.  This is the list she wrote.

1.  Where did you get information about autism?

2. What was your initial reaction after reading (the information)?

3.  How many people did you see?
a) Less than ten
b) Less than fifteen
c) Fifteen to thirty
d) More than thirty

4. What will you do if you see a five-year old Autistic person?
a) ask curious questions
b) Advise parents
c) Ignore them as if they are invisible
d) Talk to the child by saying, “Hello”

5. If an Autistic teenager holds (touches) your clothes, what will you do? (No choices)

6. What do you expect to see in an autism classroom?

7. Will you let an Autistic teenager spend the weekend with your family?

8. What present will you buy for an Autistic person?

9. Will you accept if autism is not cured?

10. Did you enjoy the questions?

From Ariane:  What struck me as Emma created this list was how so many organizations, therapy centers, schools, treatment facilities and people who have chosen the field of autism as a career and yet do not treat Autistic people with the respect and care one would show others one supposedly “loves.”  Any who suggest the conversation that continues to take place regarding autism and our autistic kids is not affecting them, is sadly mistaken.

Emma writes her list of questions

Emma writes her list of questions

13 responses to “Emma’s Ten Research Questions

  1. Amazing. And awesome, as usual. Such profound respect for your family for forging your own path to understanding, and gratitude for Emma’s willingness to share with us part of who she is.

  2. I’d love to answer these questions! Rather than do it here, do you mind if I email you?

  3. I’m not sure if Emma would like her Internet audience to answer as well, but I’ll do it anyway:

    1. I first learned about autism when I got my childcare qualification in the Nineties. However, most of my knowledge comes from working with autistic children, and last year I finally realised I’m on the spectrum myself.

    2. I’m afraid I can’t remember.

    3. d

    4. d

    5. I’d probably think they try to get my attention and ask them if I can do anything for them, after saying hello (if we haven’t already talked).

    6. Autistic teachers (they are the only ones who can understand autistic children) and a lot of equipment for visual and creative learning.

    7. I’d be delighted!

    8. That depends on the person’s likes and interests; after all, autism is ultimate individuality, and no two of us are the same.

    9. I’m sure that if autism were ‘cured’, mankind would be doomed. Without our way of thinking, there’d no lightbulbs, no antibiotics, no Internet and probably not even the wheel.

    10. Very much!

  4. All your research questions are very good Emma. On the jargon side of things it looks as if you favour what is called “qualitative research” ; and I would reckon your thinking would be echoed by what is called “critical social psychology”. So you are very much on the right track, research-wise.

    The research questions which jumped out for me are: “where did you get information about autism”; and “what was your initial reaction after reading (the information)”.
    The two questions are very much linked. The second question might be the most difficult one for people to answer; and perhaps the most important one for people to answer.

    I’m assuming that, because you are working with Soma, you are at a big autistic event.
    I think you may well have a gift for “reading” such events holistically; just knowing what is going on at them. That’s a gift that qualitative researchers can use. It seems to me that your manifesto of research questions expresses how you so read what is going on around you.

    • Emma’s questions are very wise and thoughtful, but your reply is just brilliant as well. The most important questions to have answered are indeed usually the ones that many people are afraid to respond to….

  5. brilliant 🙂

  6. 1. Where did you get information about autism?
    Websites, blogs, message boards, people in my class, books, movies, university course.
    2. What was your initial reaction after reading (the information)?
    Curiosity, fascination, reflection. I tried to imagine what I would feel like with autism, I looked at the sides of me that are autistic-ish and the sides of me that are opposite. I am an ESL teacher (adults not kids), and the 2 students I had in my class that were autistic were amazing individuals but sometimes exhausting. I can’t really generalize, though, because it was only two people, but they left very strong impressions and I am still in contact with them on Facebook.
    3. How many people did you see?
    a) Less than ten
    My 2 students, my friend’s daughter, and I sat in on a session with an SLP once with an autistic boy.
    4. What will you do if you see a five-year old Autistic person?

    d) Talk to the child by saying, “Hello”
    5. If an Autistic teenager holds (touches) your clothes, what will you do?
    I would feel happy that they felt comfortable with me to do that, and I would hope that they were feeling good (I would hope the sensation was nice!)
    6. What do you expect to see in an autism classroom?
    Do you mean a class with only autistic kids? Or adults? I guess it would depend on a lot of factors, the age, the subject, etc.
    7. Will you let an Autistic teenager spend the weekend with your family?
    Of course!
    8. What present will you buy for an Autistic person?
    I like to buy things for people that have to do with their interests. Presents are hard to buy for anyone, though. Sometimes it’s hard to find the right thing that isn’t too expensive. A gift card for an adult or a toy or a book for a child, I guess.
    9. Will you accept if autism is not cured?
    Yes. The world is made of all different brains and that’s a good thing.
    10. Did you enjoy the questions?
    Yes! Now I feel like you know me. I always read your blog, so that’s nice.

  7. Pingback: Who is faking their love? A set of Answers for a curious mind. | Naimeless

  8. I particularly like #10 – did you enjoy the questions. Why? Because I think, even if you didn’t get the “right” answers for all of them right away, but you enjoyed thinking about the questions, which all make you think about how to interact with an autistic person on their terms, the process is actually fun and gratifying. So #10, to me, is actually my favorite indicator. 🙂

  9. Brilliant questions! Per Emma’s permission, it would be wonderful if you can circulate these questions more broadly. They are very wise, and heart-centered questions at the same time.

  10. Where did you get information about autism?
    From being autistic, university, dialogues with other autistics, biographies. It is a process not a one time event. So it goes on.
    2. What was your initial reaction after reading (the information)?

    Did not read it at first. Some of it was false so I struggled with that. Hoped to have enough academic qualifications one day to challenge the things that are wrong from both ends. Being autistic but having a doctorate so if I say this is not how it actually is (having done research to challenge a lot of it) “Experts” cannot just say yes it is because 99 percent of us have decided. They will, I hope have to consider it

    3. How many people did you see?
    Sorry for not going with the multiple choice format. Too many to count overall. I am old.

    4. What will you do if you see a five-year old Autistic person?
    Again usually d but it depends on the person. There have been times when the autistic person in that age range initiates things and then if they have made a comment and I can see they and I share the same enthusiasm I go with that rather then hello ,

    Depends on the setting too.. If I am in charge of several children in a formal setting then while I may realize that at least one of them has autism then I included them in however I first address the group. This has happened.

    A lot of variables in what comes first although some form of greeiting that is directed to the person ,
    5. If an Autistic teenager holds (touches) your clothes, what will you do?

    I do not have children but hypothetically or less hypothetically as I do sometimes care for children it would depend on where. As long as it was not inappropriate I would not care. If it was then it would depend on who was there as often if the parents are NT they would prefer I address things like that so I would if it was possible (say it happened at a house where I go because parents need help with their kids and we had estabished a relationship I would go to where they feel most comfortable and explain so they are not embarrassed or shamed in front of others. \

    6. What do you expect to see in an autism classroom?
    We don’t have segregation like that here so while sometimes there are courses for more than one autistic there is not really any such thing as an autistc classroom. People with autism are in regular classes with an educational aide if needed or without if not.

    I did not attend a different class but I could leave (or because I was ahead had to leave for some subjects) When I grew tired of what I described as exile t the library we had permission to kick a vice-principal uut of his office and he had to take his work to the library so I could have some quiet and a desk
    7. Will you let an Autistic teenager spend the weekend with your family?
    When they feel comfortable with that. When I get a better place while he is not a teen yet the plan is for an autistic child friend to come and stay with me sometimes so he has a break from being with his typical family and we can enjoy each others company.
    8. What present will you buy for an Autistic person?

    Depends on the person and what I know interests them of if it is something stressful wheat calms them. The autistic child in my life now likes movies and bookmarks and rocks (I like rocks too) If he were sick I would get him a rock. When I was sick and I had bought he and his brother kinder surprise egges (has a toy inside) one of the toys was a spinner with holographic stickers and he gave it to me because I like when I am strssed to spin things and see the colours flash.
    9. Will you accept if autism is not cured?
    Of course. I do not believe it can be thankfully but I am the person I am meant to be. They will not cure me of being me nor should anyone spend so much time and money on chasting a cure they already know is impossible. They should spend it on supports and educating people on what acceptance actually is which isn’t we will accept you when you are a different person but we accept you now. I will fight allocation of resources to cure as long as their are autistics who do not have their needs met and could if things wee senseible.

    10. Did you enjoy the questions?
    I am a bit stressed right now so I am not sue enjoy is the right word. I wanted to answer them thoughl

  11. Great questions Emma. I think I first read about Autism on Wikipedia (not the most reliable source of information, I know).

  12. Excellent questions, Emma, and I agree with both Colin and E about the importance of some of them in particular!

    So, like some others, I will answer them for you as well. (To help with your research! 🙂 )

    1. Where did I get info re autism?
    The first I really heard of autism/Asperger’s was when my brother sent my mother a New York Times article about Asperger’s with the note, “Doesn’t this sound like someone we know?” Then, while my youngest sister was studying for her Communicative Disorders Assistant diploma, she sent me some information that they received on autistics (and it made me break down – in relief – that there were others like me out there!). Other than that, All Cats Have Asperger Syndrome by Kathy Hoopmann, Asperger Syndrome and Anxiety: A Guide to Successful Stress Management by Nick Dubin (which I plan to re-read this week), and then my blog circle, as well as further information from my sister as she went through her SLP Master’s degree, and info from my psychologist, who has training in dealing with autistics. Some information from the Autism Society of Newfoundland and Labrador. But most of my information – and thus my understanding of myself – has come from the members of my blog circle, and writing about my own experiences.

    2. My initial reaction?
    In a lot of cases, either relief or “that makes sense!”. A great deal of “Oh, so that’s what’s going on!” as well. Really, most of the time it was like a key clicking into a lock made for it – not quite “Eureka” moments, but small things that suddenly made sense where they hadn’t before. (Ref my answer to #1, and the info I received from my sister while she was doing her CDA diploma.)

    3. How many people did you see?
    I’m assuming here that you mean autistics / fellow autistics, as opposed to just people who believe they know about autism that include allistics / neurotypicals. If you are including the latter, my answer would be… D. If you’re only including fellow autistics…. Ones I’ve met in person or who I have a very close relationship with anyway: 11. Ones who I know through online blogs and posts about autism: Many! 🙂 Not sure of the exact number.

    4. If I see a five-year-old autistic person?
    Actually, I’d be more inclined to see what they want to do. They may not want me to approach them (my first inclination would be to nod my head to them and say, “Hello” or “Hi” – answer D). If they indicate in some way that they want to interact with me (most likely by coming up to me, starting a conversation without coming up to me, or trying to touch me), I’d probably crouch down to their level and say hi, or let them touch my clothing if that’s what they were interested in. If they weren’t showing any interest in me, I’d probably greet the parents, and… not sure, actually. Try to indicate to the child that I would welcome interaction if they feel like it? I think it would depend on the feel of the situation, as best I could make it out. I’m learning more about autistic children (thanks in part to your mom and you!), so I think I’m slowly building in my head an idea of how to approach them, but I haven’t got anything concrete yet. I know with the other autistics I see around the ASNL, I say hi – but they’re usually about 10 and up.

    5. If an autistic teenager touches/holds my clothes, what would I do?
    Hm. First, I’d assume that there’s something about the cloth that appeals to their senses. I know I tend to be a touch-seeker myself, so I’d be less inclined than perhaps a non-educated allistic / neurotypical person would be to find that rude. I would probably ask them if they liked the feel of it, or maybe what they liked about the sensation. But… I would have to know that they were autistic first. Generally, if someone I don’t know tries to touch me (or even my clothes) I pull away.

    6. What would I expect to see in an autism classroom?
    First of all, children allowed to stim. Very important.
    Secondly, one section of the classroom for work, one for play / leisure activities – it helps to divide the two, gives more structure.
    Indirect, non-fluorescent lighting; no artificial scents or scented air freshners; quiet…. (The problem being that some autistics, particularly those who are hyposensitive to sensory things that I am hypersensitive to, would need different things, maybe music playing, or some form of spinning lights, perhaps? That’s part of the issue with being on a spectrum where there are so many different combinations of sensory sensitivities and “mutings”.)
    Balls. Small squeeze balls, for when children are feeling stressed or find squeezing things a stim; larger balls to practice gross motor coordination skills with, and play with; maybe even yoga/exercise size balls.
    Children allowed to play as they want during leisure time, with no expectation of what is “proper play”. I definitely agree with Musings/Cynthia in her post about the importance of play! (http://musingsofanaspie.com/2014/05/29/the-importance-of-play/)

    7. Would you let an autistic teenager spend a weekend with your family?
    Definitely, though unless they were looking for mentoring, I don’t know why they might want to…. 😉 As long as their needs (sensory, etc.) and mine mesh reasonably well. I don’t think I could tolerate sharing space with someone who needs loud noises or bright lights, because of my own sensitivities! But that’s not really to do with being autistic so much as it is to do with the idea of the spectrum again (ref my answer to #6). So as long as our sensory needs meshed enough that we would be able to tolerate each other’s needs, it would be fine.

    8. What present would I buy for an autistic person?
    Well, that would depend entirely on what the autistic person in question wanted! *grins* Honestly, verbal autistics can simply ask for things they want; those who are partially- or non-verbal are (unless they have serious gross motor coordination issues) perfectly capable of pointing to pictures, or writing, or other means of communication. (Which is, after all, part of the point of these questions! 😉 ) If I was told it was something like a Secret Santa (so I couldn’t just ask them directly what they wanted), and I didn’t know them personally, I would probably ask about their interests, and get them something based on that.

    9. Will you accept if autism is not cured?
    Hells, yes. Do I think the co-morbid issues that can arise with autism (epilepsy, GI issues, depression, anxiety, etc.) should try to be cured? Yes. But those aren’t autism. Autism is a semi-specific neurology, and quite frankly, as a science fiction fan (even before I was aware myself that I was autistic), I believed quite firmly in Star Trek’s Vulcans’ IDIC – Infinite Diversity in Infinite Combinations. It would be a very boring world if we were all the same. And quite probably not as “advanced” technologically as we are!
    I would like it if people understood and accepted our sensory needs, definitely. There’s an idea in the disability movement (not sure when it started, but I definitely think it applies to this): disability is not a personal issue; it’s an environmental one. That is to say – if people had the correct accomodations and supports, it would effectively be as though they were not “disabled”. Yes, they would still be autistic, or epileptic, or in a wheelchair, or deaf / hard of hearing, or blind – but the environment would be such that the negative elements of that would be minimized, if not eliminated. That is more what I look for and would want for autism.

    10. Did I enjoy the questions?
    Yes. Even if I hadn’t, they made me think, and analyze some of my own thoughts about things. But it was enjoyable answering them. 🙂

    Excellent set of questions, Emma. (And sorry for the long rambles! 😉 )

    🙂 tagAught

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