Category Archives: Autistic Role Models

From Anthropological Duty To Love Or Things Not to Say to Your Sister-ln-Law by Kis Brink aka Gareeth

What follows is a guest post by Kis Brink (for those who follow this blog you will know her as Gareeth).  When she sent it to me, I was so taken with its insights, the power of her writing that I asked her if I could post it here.  Kis gave me her permission for which I am honored.  It was this piece by Kis that inspired yesterday’s post:  Yes, These Are Things I Think About, What About You?

“Love is a very controversial word in the history of autism. Hurtful ideas that autism was caused by the failure of parents to love their children and equally as hurtful ideas that autistic people were incapable of loving were put forward. Many still believe them. For me love was something I learned over time and it is still a word I use cautiously and sparingly. I do not say, “I love you” unless I am sure. The word is never used to express a strong preference for something. I think love is like many other aspects of Asperger’s and autism where our take on it may be slightly different but this in no way renders our love less real. It took time for me to learn this though.

Society has rules about love. Who you should and shouldn’t love. Who you should love the most and so on. I like rules. I wrote about my adherence to them and creation about them in a previous article. As a child when the word love was mainly a word devoid of emotional content I had no problem meeting the norms for when to use it. It was only as my range of emotion increased that this became a problem. 

Anyone who knows me well knows that unless you are prepared for honest answers don’t ask me a question. I know some people with Autistic Spectrum Disorders who have learned to use socially useful lies of the kind society expects. While seeing how they may be handy in many situations not only is this against my rules, I even have theory about why this is wrong.  I tell those unfortunate people trying to help me by explaining that sometimes you need to tell small harmless lies that I do not believe there are degrees of truth. I expect that some autism experts would be quick to label my thinking on this topic black and white thinking, but it is the way I think. I tell people trying to convince me it is useful to lie that I don’t believe in white lies. To me there is truth and non-truth. This is the reason why I must think very clearly and sometimes long on what may seem like a “no-brainer” to most people.

“An everyday example of something I give more thought than others is the simple, “How are you?” that comes up everyday. I have even concluded from experience that most people’s automatic answer of fine is seldom the truth. This whole ritual seems illogical to me. If you care about the person you then have to ask more questions to determine what the truth is and if you don’t, well to put it bluntly, why ask in the first place? I know it is a normative behavior in our society.  How this applies to love is it is also taken for granted that you will love your family and any offspring they produce. This, I think for most members of my family, would be reasonable. The part that gets me is, it is assumed that the onset of this love will be immediate. I don’t do immediate love. It seems illogical to me and perhaps even untruthful although it may be the truth for those who say they do. I have questioned some people on the subject but have yet to get a clear enough sample for a definitive conclusion.

“This brings me to the subtitle of this piece: Things Not To Say to Your Sister-ln-Law. I’ll say right off the bat that I am lucky to have an extremely understanding and kind one or looking back I suspect I provided ample opportunities for our relationship to grind to a complete and permanent halt. Almost ten years ago now my first nephew was born. He was in fact the first member of the next generation for our branch of the family tree. I was happy for my brother and sister-in-law and glad to be a Fasta (Danish for father’s sister). Society however expects more immediately. It seemed no one else had any reluctance to express love for this new scrap of humanity. I live some distance from my brother but planned a trip to see this child for the summer.

“When my nephew was four months old I made the trip to see him. On the coast I had been spared much questioning beyond his height and the usual things like that. I had none of his other kin to compare myself to. I had a new role as a human and I was going to figure out what it entailed.  The first night of my visit after my brother went to bed, my sister-in-law and I were in the kitchen together. She asked what I thought of my nephew. It was a question I was still working on internally. I had these vague feelings that I could not quite name. I didn’t feel it would be correct to call these new feelings love at that point so I commented that I felt a sense of responsibility and commitment to the first member of the descending generation. This was a concept I had learned in anthropology that, to me, seemed to best sum up what was happening inside of me.

“Well it was quickly apparent that this was not quite the answer she had been expecting. I don’t remember if she was near tears or merely frustrated or both when she told me, “You know it’s okay just to love him.” This didn’t really make sense to me. I suspected I would grow to love him. I had hopes about what our relationship would be like. I knew people love their nephews and nieces and that his other aunts and uncles were able to say they did without batting an eye. I went to my room feeling frustrated and confused. I had been looking forward to being a Fasta and it seemed I was already messing up at it.

“People have called me a kid magnet. Children seem to gravitate towards me and enjoy being with me. I enjoy them as well. Despite the fact that my nephew was only 4 months old I did feel a certain sense of pride as I observed how well he kicked his legs around at the gym-toy babies have for kicking. I felt more feelings which I couldn’t identify when I looked at him sleeping, I even took my friends in to admire the marvel of him asleep. Maybe if I didn’t have autism I would have concluded that all this did in fact constitute sufficient grounds to say I loved him.

“Pictures taken at that time with he and I show a softening in my face that is positively maternal. Journal entries reflect a marvel for even his simplest behavior. I spent a lot of time walking with him in the neighborhood, thinking about all the things I would teach him as he grew older. I felt equipped to handle my anthropological duties towards him. It was only when others spoke about him that a fear in me would surface that I was an inferior brand of aunt. That no matter what I had to teach him and how fierce my desire was to protect him until I could repeatedly say how much I loved him in a conversation I would not make the grade.

“Fortunately time passed. My own range of breadth of feeling was on a steep learning curve at this same time. With each subsequent visit I moved closer to knowing I loved him. I started to be able to do some of the things I had imagined. He learned to speak and could express marvel over issues that I did not really expect a child so young to notice or have thoughts about. One day at the zoo we passed the exhibit that explains poaching. I thought that he was way to young to really understand how bad it was and tried to explain it in a way that would make sense to him, but when his eyes filled with tears and he asked why repeatedly I knew he had a special soul. A soul that would require more diligent protecting and nurturing than I had thought.

“There were other signs in those days. He had an obsession for whales. One Christmas everyone seemed to know that they had better get him some form of whale or not even bother with a present..  All seemed well in his world until he opened up a whale that had the wrong color tongue. Most of us were surprised that he knew so much about so many kinds of whales but his action regarding this whale was decisive. Into the garbage it went. No amount of explaining that it was wrong to throw out a present or offering to correct this error would convince him that something horrible had not happened. He asked the perennial question of childhood although his whys were a little more detailed. Why would someone even make a model of a whale and not get the tongue color right. Well the kid had a point on that one.

“One day a few months after his maternal grandfather had died my sister-in-law phoned to report what he had said at pre-school. It was the final and convincing evidence I needed to conclude that his soul was so special that not only did I love him with all my heart, I was prepared to do battle against any who might attempt to hurt this soul.  His pre-school had a no-violent-toys rule that was enforced quite strictly. A boy had ignored this rule and had a toy sword with him. My nephew told him, “Sword all you can while you are young, because you can’t take your sword to heaven because when you go to heaven you are flat.”

“Well the first two parts of what he said amazed me. The part about being flat also made sense in the context of his life. His grandfather had been cremated and scattered in the mountains. This is where the flat notion came from. I couldn’t have been prouder of him if he had discovered a cure for cancer. I thought and felt all the things that I had worried about not feeling for the first few years of his life. I rushed to get the exact quote and pinned it to my bulletin board in my most sacred spot – right above my computer. I listed his age and his title: Philosopher and Theologian.

“I have always identified with the song by Don McLean, “Starry Starry Night.” The line where it says, “the world was never meant for one as beautiful as you” hits home to me. When the world hurts mostly because it fails to understand people like myself and people with other differences I think of this and there is some comfort in the idea that it might be a question of being an excessively beautiful soul for the world in which we live. I knew immediately that my nephew too was one of these people and any last question about whether the feelings that had strengthened overtime qualified as love vanished.

“Yes it was a journey to this point. Not a love that I could say I felt with confidence on his birth but this does not make it a conditional love. I love everything about him. Many of my happiest hours are spent in his company. His excitement when I come, hearing him brag about me to his friends, his joy in the simple things in life would make any aunt proud. I know longer worry that my brand of “Fasta-ing” (pardon the creation of a word) is inferior. It is clear from his response that it is not.

“This Christmas he bought gifts for other people for the first time. About mine he kept saying it was small but precious. I had no doubt that it would be. Like myself he too seems to need symbols to represent people who are absent and his feelings for them. I was delighted to receive a piece of pyrite from him on Christmas morning. He has one similar to it. I told him that I would keep it by my bed the way his was so we would both always be reminded of our love for each other as we fell asleep and woke up. I hardly need reminding at this point though. Still that once mysterious feeling of love fills me completely when I look at this precious stone and contemplate the beautiful relationship I enjoy with my nephew.

“For those of you who may have relatives with high functioning forms of autism, when they give you not quite the answer you expect, I hope you take into account our unique perspective on the world. Particularly in the realm of emotion we may be embarking on a whole new voyage. I feel so lucky to have a sister-in-law who could forgive my atypical response, who brings it up now and then with humor, but especially for having a nephew with a soul so beautiful he brought me into new waters.”

Emma reading her favorite book – The Way I Feel – 2008

A Conversation with Paula Durbin-Westby

You’ve described yourself as a “nonspeaking (at times) Autistic.

“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was “being quiet” or did not have anything to say; that dates back to childhood.”

Why did you make a video of you not speaking?

“I made the video because we need to change some of the ideas about “high functioning” and “low functioning” Autistics.  Not being able to speak is equated with “low functioning”.  A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy.  These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum.  I have always known I can’t speak on a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”

Can you talk about how and why you sometimes are unable to speak?

 “I can’t say I speak “most of the time,” since most of my waking hours are not spent talking.  I showed on my video, even when I am alone, I frequently can’t talk. I don’t need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some Autistics have called “speech sounds,” which means that I can say something, even if it is not exactly what wanted to say. I have a number of reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech, but can have some interesting results when I find a word that is not the right one!  I can go “in and out of speech” several times during the course of a day.

The following list has some of my reasons for not being able to talk. These are not in any particular order: Sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns‒which is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!”

Are there other things that stop you from being able to talk?

Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It’s the inertia of not doing it, plus I have to remind myself, consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me “Mommy, are you having a hard time talking?” and if I manage to say “Yes,”  I  am able to start talking again, although I can have a hard time formulating sentences and finding words for a bit.”

Of all the items on the list, which ones affect you the most?

“The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word is seeing, reading, or hearing something that is disturbing. I write indexes for nonfiction books. Some of them have very graphic descriptions of things like genocide or war. I did my “make myself talk experiment” on a day when I was using voice recognition software to do data entry for a book that had ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, but also seeing it in my mind, like an awful movie that I did not want to watch,. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, “Why did I switch to typing?! I don’t want to be typing!” and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn’t, but I needed to find out if I would be able to talk if I tried really hard.  My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor got “mad” at me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other thing I realized is that maybe I should be carrying an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”

What are your earliest experiences of not being able to speak?

“When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn’t. I definitely spent a lot of time looking at things like dust motes in the air and the thread on my blanket and other tiny little interesting things; I have no idea if anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn’t. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being “shy,” and was angry at myself for being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”

When did your views regarding your inability to speak at times change?

“After I learned about autism, I started thinking more about the reasons I lost speech.  I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the “big words” I used to get teased about in school.

One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”

Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?

“My son is very good at talking about things he doesn’t like, but I don’t assume that he would feel entirely comfortable directly telling me things he doesn’t like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says “Mommy! Don’t ever be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.” I don’t not-communicate with him, so he does not feel ignored. I use alternative ways of communicating with him, just not talking. I write, point, use some of my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back “Yes, mother dearest!” He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) “You don’t have to write to me; I can hear you!” He has noticed, and told me, that when he comes back from visiting his dad I “seem different.” We have talked about his coming back as a transition point- the house is suddenly noisier, and definitely “talkier.” I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from “kid gone” to “kid in the house” an easier one for both of us.”

 For people who do not have difficulty speaking, they may have trouble understanding how someone might be able to speak in one situation and then not able to in another.  Can you talk more about this?

“Some abilities are not there every single time a person wants to access them. This is true for all people, but for an Autistic person, these fluctuations in abilities and access to abilities might be more pronounced. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers  and organists feel free to disagree!). But when it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it’s not that different anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”

 Talk about the idea of language and thinking.

“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk.  For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking.  But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think.  You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow.  That person can’t think!”

What is it like when you’re unable to speak while in public and are expected to? 

“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”

How do people react to you?

Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”

Are there things that help you speak after a period of not speaking?

“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time.  It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk.  It gives me a break from the exhausting task of speech production.  My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.

Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”

Paula and her son’s writing


To read Paula’s blog, go to Paula Durbin-Westby Autistic Blog

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The AutCom Conference – Baltimore

I am in Baltimore at the AutCom Conference.  Since the conference begins first thing in the morning, I arrived yesterday afternoon by train.  As I waited for the shuttle service to arrive I witnessed a group of men yelling at each other.  Suddenly one enormous man lunged at another, grabbed him by the throat and began to strangle him.  Several other men jumped in, amidst lots of yelling and swearing and finally were able to pry the two apart, only to have the one who had been strangled race after the strangler, shouting descriptive words which I cannot repeat, mostly because other than a few F bombs, I couldn’t figure out what he was saying, though by the look on the attackers face, they weren’t friendly.  After witnessing two men practically killing each other, I was greatly relieved to see the shuttle pull up to whisk me away.

The van driver stopped only once to pick up a party of six elderly men who were off to a business retreat.  The one gentleman seated next to me after having an animated conversation with his wife, though I’m not sure about her identity, but was clearly someone he knew well and felt comfortable hanging up on – twice –  and then called back.  Exhausted from all that, he promptly fell asleep listing so precariously in his seat that I feared he might just keel over completely.   I scooted as far away from him as was physically possible lest he fall into my lap like a felled Redwood.

The drive was otherwise uneventful. Much to my delight the hotel looks out on a beautiful lake where I saw this… I believe this is a White Egret.  I could be wrong, but in Northern California, where I grew up, I remember seeing one once and it looked a great deal like this.

A panoramic view of the lake.

Sculpture with the lake in the background…

The conference begins at 9:00AM this morning with a welcoming ceremony by Ari Ne’eman, followed by a keynote address by Jennifer Paige Seybert.  I intend to then go to Julia Bascom and Savannah Nicole Logsdon-Breakstone’s presentation – The Loud Hands Project.  However Larry Bissonette, Pascal Cheng, Harvey Lavoy and Tracy Thresher (of Wretches and Jabberers) are also presenting at the same time, and I’d love to hear them too.  The entire conference is a who’s who of wonderful presenters.  I don’t know how anyone is able to choose!

It’s all very exciting and I’m so happy to be here!

An Ode To Ibby And Her Tiny Grace Notes

My friend Ibby has started her own shiny, new, fabulous blog, called Tiny Grace Notes (AKA Ask An Autistic!  *Doing a little snoopy dance*

This is how Ibby describes her blog:  “The purpose of this blog is specifically so people can ask me things that may not come up on other blogs, which I completely recommend reading.  But let’s say you have a burning desire for the answer to a question that nobody blogs about that week?  Come here and ask it in the comments.  You can do that right now.  I might answer myself, and I might also remember that my friend told me about it a couple months ago, so I could answer from multiple viewpoints in conversation.  Also, I may be able to give you a study about it that isn’t insulting and eugenic and horrible.”

This is how Ibby describes herself:  “I’m an Autistic member of the Community and an education professor…”

Ib is an educator.  She teaches educators.  Not only that, but Ibby is patient, incredibly kind, nonjudgmental and one of the funniest people I’ve ever met.  Seriously.  (I love saying that after saying someone’s funny…)  I know Ibby’s blog will soon have more questions than she’ll have time to give, so I’ve already elbowed my way in there and asked her a question in the comments section!  If you want to ask her something go over there NOW and get in line, because I have a feeling that line is going to get pretty long, pretty quickly!

Just to backtrack a little…  Most of you have heard me talk about Ibby.  We met at a Disability Conference here in New York City where she was presenting last spring.  I wrote about meeting her ‘here‘.  It was one of those magical moments when you meet someone and you just know instantly, you just know there’s an immediate bond, an indescribable feeling of closeness that defies explanation.  That’s what it was like for me when I met Ib.  She flapped, I allowed myself to do a tiny little, tentative bounce on my toes, nothing that would call attention, (I was new to the sensation, had not allowed myself to engage in such behavior since I was a kid, but it felt GREAT!) and we hugged.

After that first meeting we kept in touch.  In fact, we began “talking” aka IMing each other once or twice a week and then we began talking several times a week.  We talked about autism, I asked her if I could ask for advice about Emma and she graciously not only agreed, but patiently explained and re-explained things I found difficult to understand.  Over time we began talking about ourselves more.  I began to talk candidly with Ibby about my guilt over the things  I’d done, the various therapies, the remedies and Ib told me more about her life.  This was a post I wrote after one of our epic conversations.  (I hadn’t asked Ib if it was okay to use her name at that point, so I didn’t.)  We found we had similar senses of humor, we went off on whole riffs together, and I laughed.  I laughed with Ib as I hadn’t laughed in a very long time.  As our friendship grew, so did my hope.  Now, if too many days go by and I haven’t been in touch with Ib I feel a little off, a little melancholy.

All of this is to say, Ibby is rare.  She’s brilliant and really, really smart, which aren’t the same thing.  You can be brilliant, but not very wise.  Ib is both.  So go over to her blog and ask her some questions, because honestly, I can’t think of a better person to go to.

Totally unrelated photo taken by Richard of Em at MOMA

Performer, Singer, Mother, Wife, Friend & Autistic – An Interview With Chou Chou

I met Chou Chou last spring when she left a comment on this blog.  She wrote, “I love your writing, and find your darling Emma startlingly like me as a child.  I am a happy, successful, 58 year old autistic woman.  I just wanted to say you and your husband are wonderful parents, and Emma will be fine. She will be wonderful. She is wonderful.” 

 I read her comment a dozen times. I felt indescribable joy and I wept.  I was just beginning to read the writings of Autistic adults and had started, very tentatively, to reach out to a few of them.  Then out of nowhere there was Chou Chou reaching out to me!  I was so excited!  I doubt she could know how much her kind words of encouragement meant to me.  We’ve been in touch ever since.

Chou Chou performing with Doc Scantlin and His Imperial Orchestra

 Tell me about you as a child? 

Boy! Where does one start? I was a very passive baby, and did not react to people, or reach for toys. My mother said I appeared content and able enough, but it was as if she would lose me if she wasn’t careful, as if I would slip away into my own world, forever. Baths seemed to perk me up, so I was given five baths a day, and then played with after baths. My toys were put on strings, so I could look at them, since I wouldn’t play. I would cry for hours, but could also be in total bliss. I was very late talking, almost five, except a few words, and had trouble throughout my youth speaking. I was a toe walker, head banger, and would bite myself. I had a faulty immune system, and was sick constantly. Ear aches, flu, tonsillitis, all the respiratory stuff. My gut was a mess. All one has to do is read your posts on Emma, and that describes what I went through. I did not play with other children, although I would play beside them. I was hypersensitive, and needed much time alone to recharge. I loved nature, art, swimming, especially underwater, and performing. Performing was just like plugging me into an electric socket! I would come alive! My mother realized she could make me connect better by giving me a character to play, and a small script. It has served me well.

When were you diagnosed?

Age three. My mother was the business administrator of a small, prestigious rehabilitative home, named Idylease, in northern New Jersey and the doctor in charge became our family doctor. This was the mid fifties, and he very cutting edge, because of his position at the home. He diagnosed me, much to my mother’s horror and shame. At the time, autism was considered caused by cold mothering, and children were often institutionalized, to protect them from their bad mothers. My mother hid the diagnosis, and began a masterful strategy, that not only got me through school, but made me grow into a competent, happy (if a bit odd) woman. She was a brilliant, wonderful mother.

The word autism was never used. I was called slow, or special, or a late bloomer. It was not until the late 90’s that I was told of this early diagnosis, which was confirmed by my doctor.

Can you talk a bit more about your mothers horror and shame?  Did she believe her parenting caused your Autism?

She did until the day she died. We would have long talks about it, and I would explain, over and over, what a wonderful mother she was, and all the ways she helped me, and I sometimes thought she would “get it”, but she never did. She was a career woman, in an age when that was controversial enough, and had many symptoms of what I now recognize as Aspergers, although she was never diagnosed. She was a mathematical, logical, brilliant, woman, who was loving, but not often in an emotional way, nor was she social. Unfortunately, she interpreted that as her being the “cold mother” that was considered the cause of a child being autistic. This made sense to her, and I was never able to sway her completely, and have her forgive herself for this false accusation. I know she hid my diagnosis for her own sake, as much as mine. She feared the world would see how terrible she was. So, so sad. I adored her, and she did so much right!

How did the diagnosis affect you?

 It did not effect me as much as those around me, once I opened up about it. Yes, it was nice to pinpoint what I was dealing with and to put a stop to years of misdiagnosis, but I already knew who I was, and, like most autist adults, had created a multitude of strategy for getting by in life. The biggest thing was that I could be honest: about why I wouldn’t come to a party, why I had trouble following a conversation, why I would stop mid sentence sometimes, or covered my ears, or twisted my fingers, or had a peculiar way of speaking. It was obvious I was under much stress, and that made people uncomfortable, and made them think I didn’t like them much, I think. Now, I simple speak up when I need to, and politely explain my challenges. Everyone relaxes, and tend to be helpful and kind. Sometimes, it makes people talk to me as if I am a child, but I can quickly nip that in the bud! I often say that what I am dealing with is neurological, not psychological. Don’t get me wrong, I’m as neurotic as anyone else, but my neurological makeup is far different from the vast majority of people. I am no better or worst than any one of the unique people roaming this planet. However, I am, it appears, of a certain somewhat predictable, if varied, ilk. I am an autist, and a happy one, and am coming to realize that there may be others rather like me, younger ones, who could benefit a bit from my becoming part of the conversation. After a lifetime of hiding my differentness, this does not come easy, but I believe there is a responsibility that is mine to accept.

I am an autistic woman. Other than that, I am perfectly normal. Aren’t we all a little strange?

What do you remember of school?  Did you go to a nursery school? 

No. Since nursery and kindergarten were mostly playing, which was hard for me, my mother kept me home until first grade. This was the peak years of the baby boom, and the schools were very, very crowded. I went to parochial school, along with my older sister, brother, and, eventually, my younger sister. I think it is hard for anyone to imagine how overwhelmed the schools were by the boom. There were 72 children in my first grade classroom alone, and there were three first grade classes. It was easy to get lost in the shuffle. School was a horrible, overwhelming blur, and I mostly sat quietly and obey the rules. I am very big on rules! I was always the “slowest” child, never finishing tests, had difficulty speaking, and was pinching and biting myself. During recess, I did not play with others. I would find some detail to focus on, like an ant, or the links in the fence. I had great anxiety and fear at school. Sometimes I wasn’t able to contain it, and I would cry inconsolably. I would be sent to the nurses office, and cry it out, or be sent home. Throughout school, my mother would watch for signs that I was getting overwhelmed, and keep me home, so I could be quiet and recharge. It was easy for her to make excuses, since I was sickly anyway. Usually she would write a note saying I had a gastrointestinal virus. I missed a lot of days at school, either really ill, or with these fictitious viruses.

Were you treated differently?   

Yes. There were no special education classes, but there were groups within the class. I was in the slow group, and given special reading skill projects and tasks. This confused me, because I was a voracious reader at home, beyond my age level. I just couldn’t communicate it, so they thought I couldn’t read. I was protected. My big sister or brother knew they needed to have me tag along, so I didn’t get lost or hurt. It was not considered safe for me to be alone, unless I was in our home or yard. We all just accepted that. I was in my own world, and wouldn’t watch for signs of danger. I was never punished, like the other children, as it would totally destroy me, and I would harm myself. Sometimes my brother and sisters resented that. They would be punished, but my errors would be quietly explained to me. That was all that was necessary. I loved to know the rules.

Did people talk about you in front of you? 

Constantly. I didn’t mind, because, it was easier to listen to the conversation than converse myself. Sometimes, of course, it was frustrating to not be able to express myself. I remember hating cooked carrots. When they were on my dinner plate, I would force myself to eat them first, so they wouldn’t “contaminate” the rest of my meal. My father thought it meant I loved them, and would pile on more. I would burst into tears, wondering why he was torturing me with carrots. Poor guy.

There were, and still are, many times I have difficulty following a conversation. Particularly “small talk”. When I listened to other children, it made no sense to me, but I never felt it was because I was less intelligent. Their bickering and constant competition sounded unintelligent to me. My interests were quiet, and beautiful, to me. Their playing was constant battle.

Do you remember any particular instances when you felt people or other children didnt understand you?

It was a great conspiracy of mine, along with my mother, that I was intelligent, and even talented, but was considered so deficient. I felt that my world, the one I played in alone, was beautiful, and that the other children struggled in meanness and chaos. I did not feel less than them. Because I was quiet and never mean, and most of the neighborhood kids went to our Catholic school, it was decided I was somehow blessed, that I would grow up and be a saint. Perhaps my mother started that rumor. She was awfully clever at protecting me. It kept them from picking on me, as it would be unheard of to harm this holy creature. I was left alone, but guided and protected, and even included. They always tried to involve me in games, but I didn’t do well with them. They were illogical. Sometimes they would invent special roles, so I would be included. If they were playing “war”, they would put me on top of the swing set, like a princess needing rescue, and I would cry, ” Help, save me” over and over, while they wrestled and battled. I would also have some terrible hours of crying, but these I don’t remember well at all, and always forgot they even happened once I recovered. They were not discussed.

Did you have other sensory issues that you were aware of? 

My sensory challenges, without a doubt, were and are, the major issue for me to contend with. I now speak, write, and socialize well, but I experience the world in a much different way, sensorily, than is in the average range. I understand this now, and have devised many way of protecting myself, but I did not understand this when I was younger. I thought everyone experienced life the way I did, but that I was some kind of weak character because I “couldn’t take it”. Sights, sound, smells, emotions, all were overwhelming. My clothes scratched, and I thought digestion, and sometimes even breathing, was a painful process for everyone. I had a headache all my life that I didn’t even know I had, until I had some pain medication as an adult that made it go away. I would bang my head, and had to bounce and rock to fall asleep. I would cry on trips home from anywhere, because being out was overwhelming. I hurt, and the stimulation of the world hurt me. Why was everyone acting just fine? I would pray, and ask for forgiveness, since I somewhat bought the story that I was holy. Wasn’t I supposed to suffer as a saint? Surely, I would die young, after much torture!

Were you able to read and write at the same age as your peers? 

I loved reading, and don’t remember ever not reading, but had great trouble writing, and could not read aloud. There were a lot of monthly magazines in our house, and encyclopedias. I poured through them, and my mother got a subscription for me to a book of the month club. I liked learning a lot, and self education. In school, though, no one knew I could do this, and I lived my role of being a remedial student. The only difference was if I was given something to memorize and perform or recite. It was like a magical trick. I would come alive, so much so, that often I would be taken from class to class, to do my performance over and over, to much applause.

I come from a very intelligent family. My mother was a mathematical genius, and member of Mensa. My brother had a photographic memory, but had a head injury, and was kept back a year in school. From then on, we were in the same grade, but he was considered the smartest kid in class, and I was the slowest. In eight grade, we were given IQ tests, for placement in the high school’s track system. Test was easy, because it involved little writing, and was logical, and solving puzzles, which I was really good at. The  answers were not written, if I remember right. They were just filling in the dots, or one word. I scored the highest in the whole eight grade, even higher than my brother. It was decided I was a bored, shy genius, and I was put in track one, with the brightest students, taking advanced courses in math, Latin, and biology. That was a big mistake. I couldn’t keep up at all! I was “demoted” to track three, out of seven, where the bright, average, most popular student mostly were, and was a terrible student. My brother was made class president, and all the girls wanted to date him, so they were VERY nice to me. I got pretty, so the boys started being VERY nice to me, too, although my big brother kept vigilant guard on the advances of those New Jersey boys.

Was there anything or anyone in particular that helped you when you were young?

Without a doubt, my mother. She always believed in me, and told me I could do anything I set my mind to. When I was sick or struggled, she never for a moment treated me like I was damaged goods in any way. She would treat me with astounding respect for how I tried, and told me I was “tough as a turtle”, and a “late bloomer”. When other family members got frustrated with me, she would say, “You just wait and see. One day she’s going to show everyone what she’s made of”. She taught me to learn on my own, and gave me access to anything that I had interest in, and could do in a quiet, solitary way. She made sure I was included, but allowed me to be separate, and somehow spun it to everyone that it was a positive thing. I never had to be like anyone else. She made me feel I was wonderful as I was, and only had to be the best me, and she convinced everyone else of the same. She had a talk with the toughest bullies in the neighborhood, and made them my, and my brother, when he was injured and small, special bodyguards, to make sure no one bullied us. I don’t know if she paid them, but I wouldn’t be surprised. I remember them swaggering, “Don’t worry, Mrs. Downs, nothin’ gonna happen to them. We’ll make sure of that!”

My mother found that if she dressed me pretty, and gave me small scripts, I could become a character, and connect much better. She told me, in order to get by, to just be quiet, smile, and use my little scripts. I learned to ask questions back, by repeating questions asked to me, and, even though I couldn’t always follow the answer, just respond by saying, “that’s nice”. Usually it worked, but, sometimes they said something sad, and I wouldn’t catch it, and my response would be inappropriate. That still happens sometimes, much to my embarrassment.

My older sister changed my life, in the most astounding way. I didn’t appreciate it at all at the time, but now I do. In high school, she signed me up for drama club, because I performed so well, and was always putting on shows. I was horrified! It was a group activity. I was really scare, but more scared of my big sister, so I did it. I soared, and had the lead in many shows, and I won awards. Through playing characters, I learned to speak, and how to present myself. I went on to become a professional actress and singer, and continue to perform as my livelihood to this day.

Did you ever internalize some of the messages you received from school or others and feel shame?

The internalized negativity I feel has more to do with feeling bad that I am not able to do some things most people find easy. Feeling bad that I let others down, and can’t socialize in a more normal way. I get very frustrated that society keeps adding more sensory challenges that make things LESS accessible all the time! More noise, more flashing lights, more dependence on the value of being socially savvy, and living in a constantly socially connected way. I can no longer watch the news, because there is just so much constantly being added to help keep people’s attention, in the way of sound, visuals and speed. Many places and things are now inaccessible to me, because of the heightened stimuli.

Weve spoken of this privately, but can you talk about feelings of shame or feeling ashamed?

I go through unbearable bouts of illogical shame, although I no longer injure myself. It has nothing to do with self-esteem. I know I am capable, and that I have a great capacity for making people happy. I am a well received entertainer, with many supportive friends and fans. I’m a rather mediocre singer, I’m afraid, but a good entertainer, and can put over a song. I am loved deeply by my husband. The shame shows up most if I’m tired. I will walk onstage, and look at the audience and think, ” who are these wonderful, beautiful, people, and why am I bothering them? It makes me want to apologize for being there. I have to remind myself that they are paying good money to see me, and I need to give them my best. It is not stage fright, which I don’t have in the least. It is shame. I wake up the next morning, drained from giving my all, and am totally ashamed. It is not a feeling like I did a bad job. I can tell that the crowd was happy, and the cheering loud. It is just a horrible, illogical feeling of fright and shame, and this tough turtle pulls into her shell! I then need to hide, for surely I will die of shame, if not allowed to recover quietly. I’m fine in a few hours, and Doc is great at understanding, and can make a joke out of anything. He will squeeze me and say, ” Oh! Are you sooo ashamed? Oh no! Oh, shame on you! Oh, it is so terrible! Oh, SHAME!” We will laugh at how silly it is that I experience this, but we both know it happens, and the best choice is to roll with the punches and laugh at this crazy crossed signal I get. I think we all have our little illogical demons. This is mine. I am not sure if this is an exclusively autistic trait. I do think it should be considered when dealing with problematic self-injury. It is no small thing. There are times in my life I would do just about anything to stop the shame, or punish myself for it, without it having anything at all to do with how things are going. I have learned to make a priority of taking care of myself, and getting enough down time.

The overwhelming shame I feel has nothing to do with internalizing what others did to me. It is just one of those odd signals that come with my particular neurological makeup, like feeling punched by flashing lights, or seeing patterns and colors when I hear music.  We all tend to react to being overextended. I get bowled over by shame that has nothing to do with anything but being in a weakened state. No one causes this. I also can get in euphoric states. That can be a problem because I want to kiss and hug everyone in sight! It’s not sexual, but I just ooze with love, but you can’t go around kissing and hugging everyone who says hello to you at the grocery store!

I am pretty good at recognizing and conquering my internal baggage, and separating it from what is a more neurological manifestation, and I feel this crazy intense shame is more neurological than psychological. If there is any psychological tie-in at all, it would be that at times I am humbled, and may not feel worthy, of all the applause and special treatment I get! As I have said, I am no better or worst than anyone else, and that, above all, must be the message in conquering ableism. We are equal, and not all of us view ourselves as victims. Some of us have had wonderful people helping us, throughout our lives.

From those early days of acting in school plays, did you have a sense of what you wanted to be when you grew up?

There were certainly times when I was growing up when I wanted a life on stage, particularly because I was good at it, and people liked when I did it. I knew I would probably always perform, in some way, but never desired to be a star. It would have destroyed me! When I was a young woman, my faraway, vulnerable, nature was compared quite often to Judy Garland and Marilyn Monroe. As flattering as that was I thought they obviously did not fare too well. What I really wanted was to be an artist, a wife, and a mother, and to someday live in a little cottage by the sea. Life has certainly taken some strange twists and turns, but I have achieved all those things.

I understand I need protection in certain areas of my life, but I also have skills and desirable traits, that can enhance, and even offer a different kind of protection, in trade. I am a good, protective wife, to a good, protective husband. That said, performing is my stock and trade, and a way of making a living that is highly enjoyable, if exhausting! I’ve walked away from it many times, but always find it in my path once again. The more spiritual part of me, for what it’s worth, had to at some point say, “Okay, I’ll do it, as long as you want me to do it.”

Because social connection can be difficult, performing is a way I can connect to a group of people in a structured, rehearsed, really fun way. I adore the spotlight! It blocks so much of the sensory challenges in a room, and allows me to feel, more than see, the audience. It is a way I can party and play with everyone, without small talk, and without that nebulous ” unwritten script”, whatever-the-heck THAT is! I always wind up falling in love with those in attendance, and I adore that! It is not about showing how wonderful I am. It is a way I can remind everyone how wonderful they are and the best part is that Doc and I get to do it together. I am grateful, beyond anyone’s imagination. My mother said I would bloom, and, since I believed it, I did somehow. I am still autistic, but one in full, frenzied, exuberant, ridiculous bloom!

Chou Chou can be seen and heard performing with her husband, Doc Scantlin and his Imperial Palms Orchestra

A Revised Interview With Amy Sequenzia!

After posting last week’s interview with Amy I asked her if she was comfortable with me asking some follow-up questions inspired by her answers to my original questions.  She, very generously, agreed.  This is the new extended interview! Amy talks about her poetry, (including a poem about having a seizure) writing, being in an institution and how it feels to be ignored and thought incompetent by so many.  This interview has also just been published on Huffington Post, click ‘here‘ to read it there and do “like” it, share it and tweet it.  We need Amy’s voice to be heard to counter the massive amounts of misinformation out there.  For all of you who wonder what you can do – share Amy’s voice.  Get people to read what she’s saying.  

Amy Sequenzia, a non-speaking autistic self-advocate, poet and writer, agreed to an interview with me. Amy is someone whose work I have been following since I met her this past spring. Her powerful book of poems, My Voice: Autism, Life and Dreams, can be purchased by contacting Amy here. Amy’s writing and poems are regularly featured on Ollibean.

2012-09-10-mail.jpegAZ: Hi Amy. Thank you so much for agreeing to this interview. You describe yourself as a self-advocate. Can you tell us how that came to be?

“I think it was in PA, when I had my first real contact with a group of autistics who where typing to communicate (The Lonesome Doves). That was in 2003, and I realized I could be speaking up for my rights to more people. After that I began writing poems that were a little bit about my life. Then I decided to write to, and meet with, legislators, was encouraged to write to newspapers and later for blogs.”

AZ: How old were you when you began writing poems?

“I wrote some things soon after I learned how to type that my family thought were poetic. When I was about 16 I had a good teacher, and I wrote poetry with her. But then she left and for a while I did not have good facilitators.”

AZ: Is poetry your preferred way of expressing yourself?

“Sometimes it is easier to write in verse. That happens when I want to write but the subject is upsetting or if I am hurting. Sometimes I just feel inspired.”

AZ: What were your dreams for the future as a child?

“I had many. I was surrounded by ableism, although I did not realize that back then. I remember two things: I wanted people to know I was smart, and I wanted the other kids to play with me.”

AZ: You’ve described how people have spoken about you when you were present, as though you couldn’t hear them or understand them. Can you talk about what that feels like?

“It feels like you don’t count as a whole person. It is rude and frustrating because I can’t respond or will not walk away. It makes me sad when people who love me do it anyway. Some people even continue to do this after being reminded that I can hear, type and think.”

AZ: Do you have memories of that happening when you were younger, before you could communicate through typing?

“Yes and I would get angry, frustrated, sad. Sometimes I would cry, sometimes I had a meltdown.
Sadly, it still happens.”

AZ: Were there things you did, sounds you made, actions you took when this happened?

“I answered in the question before, but I have to add this: I don’t have meltdowns anymore. But I need to have my support person with me to make sure I can express myself, if I want to. Some people still don’t get it.”

AZ: How did you learn to communicate through typing?

“It was a long and emotionally-draining session with someone from the Institute on Communication and Inclusion (I think it was called FC Institute back then). I was 8.”

AZ: From the day when you were 8, how many months or years did it take before you were able to type your thoughts and feelings, your opinions and able to converse, or was that immediate?

“It was immediate. But soon I began having seizures and for many years I made almost no progress. After that, finding good facilitators became harder. I can type with some people now, still hoping to be able to type with more.”

AZ: There’s been a great deal of negative notions and even so called “studies” done regarding facilitated communication. Can you address this idea that FC is not an accurate or meaningful way of communicating?

“It is how I communicate. It means it is how I can have my voice heard.

FC is a process, with clear steps and a final goal — independence. It is not easy and many factors play a part in the process.

As far as I know, from all the people who say FC is a hoax, none of them has ever interviewed a user who became independent, or has acknowledged the many studies, including double-blind studies done by different facilitators with different users. All this is documented.”

AZ: For those people who have only read the negative views on FC, is there anything that might make them understand what you experience when you try to communicate without FC?

“I am misunderstood. My face does not always show how I feel and I have other disabilities that prevent me from being more pro-active. My body can be stubborn. Without FC I don’t really participate in the world. But it is important to know that sometimes I choose not to type and other times I might be too overwhelmed or tired to type.”

AZ: Have you ever had a bad facilitator? If yes, how so?

“Yes. When I was in school, sometimes people would try to facilitate with me without any information about the method. Some would guide my hand; others would not offer resistance or the right support. I could not type like this.”

AZ: How did you cope with that?

“Sadly, I did not do anything. There was no encouragement from some and with others it was as if I was a piece of entertainment. I felt disrespected. FC is a lot of serious work. I had to wait until I met someone who believed in me and was committed to follow the best practices.”

AZ: How long did it take you to learn to type?

“I took only the first session for me to find out that I could type. Typing is also a matter of practice and trust. Today I am more confident and I can type fairly well with trained facilitators after a few minutes. If I know they will follow the best practices and nothing else interferes (like a seizure or spasms), I type really well, even if I don’t know the facilitator well.”

AZ: You mention that you have other disabilities. What are they and how do they impact your life?

“I have cerebral palsy and epilepsy. I also have dyspraxia. Movement is hard for me. I am unbalanced and I tend to bump on things; I have many bruises. I cannot go down stairs safely by myself. My body takes a long time to respond and I fall easily.

My fine motor skills are basically non-existent and get spastic sometimes. I don’t feel parts of my body as I think other people do.

I can deal with all that. But epilepsy is the worst. I have seizures almost every day, without warning, at any time. It is not nice.”

AZ: Can you talk about what it is like having a seizure? Do you have any warning?

“I wrote a poem…

Seizures

Seizures are like falling into
a sad and dark hole.
Rest is necessary and no sense
is strong enough
Yet the senses are very awake.
Beside me is my soul
so tortured by synapsis
of unconsciousness.
Seizures are hopelessness
going deep into the zone
of nothing.
A giant man coming after me
vital, intense
like an entity of torture.”

Copyright 2005 by Amy Sequenzia

“It is scary, I feel like I am falling in a deep, dark hole. I only realize I had a seizure when I am back, after a while. I also have partial seizures that are like hallucinations. I don’t remember anything about those.”

AZ: Is there anything you’d recommend to parents of nonverbal children who are hoping their child might communicate through typing and/or FC?

“Give your child every possible chance to communicate. Don’t believe in every article or every ‘expert’ who says FC does not work. Go to the Institute on Communication and Inclusion’s website (ICI Website click  here) and question them yourself. Being skeptical is okay. That’s why Dean Biklen and the others at the institute do such a good job documenting everything.”

AZ: My daughter Emma is just learning to read, write, and type. She is extremely resistant, however. I’ve been told this is often the case. Were you resistant to communicating in the beginning?

“No. I wanted to leave the school/institution where I was living, so I had to make it clear. But it can be scary to have all the power to say things that can change everything.

I don’t know Emma. Maybe she just needs some time.”

AZ: When were you in a school/institution and for how long?

“I was 6 and I asked to leave after I learned how to type, when I was 8 years old.”

AZ: Can you describe that experience?

“Painful, isolating, lonely.”

AZ: What are the most common misperceptions people seem to believe when they first meet you?

“That I am ‘not there,’ that I am not smart or that I cannot think by myself, that I am a child and that I deserve pity. None of these are true.”

AZ: If you could write a script for a stranger meeting you for the first time, what do you wish they would say?

“Not what they would say, but how they would approach me. With respect and interest. Not ignoring my disabilities or how I look and act — I am not ashamed of that — but wanting to know what I think, how I feel.”

AZ: What is your living situation like now?

“I live with friends. It is their house, but it is our home. We call it life sharing. I have state funding which is not good, especially in Florida. But because my friends respect me, I can have a life I can be proud of, and happy with.”

AZ: Did/do you have a mentor? If yes, can you talk about that experience and relationship?

“My mentors are people who show me the many possibilities of my life. They don’t always know that.”

AZ: I know several people consider you extremely important in their own process of learning to communicate and in their life. They think of you as a mentor. How has mentoring others changed you/helped you?

“I hope it has helped them. I still need mentoring. It is a good exchange of ideas, experiences, encouragement and support. It feels good to be considered important in someone else’s growth. It is lovely.”

“Thanks Ariane. This was a good interview. And thank you for being supportive of autistic voices.”

Amy’s voice needs to be heard.  Please help me inform the misinformed, educate those who are being given incorrect information by any number of well-meaning people not just in the field of Autism, but all fields of  “Mental Health” as well as Education by sharing Amy’s words.  Email this, share it on Facebook, tweet it.  Amy has given interviews to others as well as written a great many pieces for other blogs.  I am listing but a few of them below.  

Autistic Role Models and Mentoring

In addiction recovery, specifically in 12-step programs, mentoring (they use the word sponsorship, but it’s the same thing) is a key component to staying clean.  Within the “civilian” population, as addicts refer to those who are not addicts, most people who have achieved any degree of financial success, climbed the corporate ladder and found even a modicum of happiness in their chosen careers will cite at least one person in their life who served in the role of mentor.  Mentors (a good one) can open doors, provide insights, gently propel you down the right path when you’ve gone astray.   Good mentors mentor because they understand the joy of giving, of being generous to those just starting out, of helping another who may be struggling, of reaching out a hand in support to someone less fortunate and expect nothing in return.  They understand the joy of giving is how they also receive.  The founders of AA understood that no one understands another alcoholic as well as an alcoholic and to stay sober, one must “be of service.”

On a personal note (and this blog seems to have fallen off the precipice of vague, broad sweeping generalities and is now firmly rooted in personal, blatant, unabashed honesty) I became intimately familiar with mentoring when I most needed one.  I was in my thirties, I was searching for a way out of the hole I’d dug myself (click ‘here‘ and ‘here‘ for more on that) and I was told, “find someone who has what you want and ask them to sponsor you.”   It was also advised that I find a female to avoid any “conflict.”  So I promptly approached a man in his 60’s, who worked a blue collar job.  A big, craggy guy with more than two decades of sobriety under his belt and almost as many from an eating disorder.  He had “lost the desire to eat compulsively” and since that was akin to finding the holy grail, as far as I was concerned, he fit the criteria for “having what I wanted.”  When I asked him, he looked a bit taken aback, but graciously accepted and so began one of the most important relationships I had in those early years as I struggled to emerge from my various addictions and find my way in the world.  That man helped me.  He had no degree or training, by the world’s standards of “success” he certainly fell short, but he had a lifetime of personal experience to impart.  He was as unlike me as one human being could be from another, except for one – he knew what it was to struggle with an addiction and come out the other side.  He was kind, compassionate, patient and generous, and with his guidance I felt the joy of connecting with another human being who knew intimately what I was going through, while trusting that if I followed his lead, I had a chance of coming out the other side.  I have since had the privilege of mentoring a great many others over the years.

We all need mentors.  (It is equally crucial we also become mentors.)  People we can turn to who have been where we currently find ourselves.  People who can guide us, whether it’s in our relationships, our careers or just in living life more fully.  Mentorship can mean a great many things to different people, but finding someone who “has what you want” is a pretty good starting point.  Which brings me to autism and my dream for my daughter, Emma.  I would love to think she might find a few Autistic adults to mentor her.  Autistic adults who might help her as she grows older, who want to take her under their wing and be a presence in her life.  An adult who is not her parent.  Come to think of it, I want this for both my children.  I don’t know how to orchestrate that.  But it’s something I think about a great deal.

Yesterday’s post, Wretches and Jabberers – Defying Labels was inspired by some wonderful comments from the day before.  One commenter, (Lauri who very generously agreed to let me share one of the video clips she sent me, you can see the others ‘here‘ ) told me about her son, H. whose life was transformed when he met his idols, Larry Bissonnette and Tracy Thresher (the stars of Wretches and Jabberers.)  She described how they spent a long evening communicating with one another.  She wrote how Larry and Tracy “have continued to nurture, support and mentor H in ways that are really magical.” Lauri wrote – “Here is a video Henry and I made last summer, it shows the magical ( I know that may sound trite, but it really was/is magical) connection he has with his mentors and friends Tracy and Larry.”

For my daughter I want an Autistic Adult with whom she might form a meaningful relationship with.  Ultimately Emma must choose such people for herself, I can only offer situations that might encourage this.  What they do or don’t do for a living is not something I care about.  I am much more interested in who they are as human beings.  The people I am drawn to have a couple of things in common.  Each of them has struggled, experienced hardship, worked through fear, taken risks, and maintained a sense of humor.  That’s the criteria for any mentor I am interested in, however Emma’s criteria may be different.  To all who have served as mentors and role models in my life and there are many, I am deeply grateful to each and every one of you.

One such role model, Amy Sequenzia, (I have written about Amy before, a non-speaking Autistic adult, self advocate, poet and writes often at Ollibean) has agreed to an interview with me.  I know many of you may have questions for her and she has agreed to answer as many as she can.  So if you want to ask Amy something, please list your questions in the comments section of this post and I’ll make sure she receives them.  Thank you Amy for agreeing to do this!

Emma – 2008