Gulf of Autism

It is a mishmash of confusing thoughts put together with a loving heart.

Apparently, she typed those desires (to design greeting cards and write a book) through FC with the speech therapist that has worked with her for years.

I think I understand what you mean by she might not want to communicate at certain times; however, Chelsea always has much to type when the speech therapist she has worked with for many years facilitates her on the keyboard. It is almost like a switch: FC by the speech therapist and the words flow like water, FC by others or me and nothing but striking keys randomly. The speech therapist is very lucky to arrive on the day and time Chelsea is ready to communicate. Somehow, it seems reasonable for me to be a little suspicious of the FC provided by the only speech therapist able to elicit communication.

Allow me to clarify, Chelsea and I were not having a staring contest. Rather, we maintained eye contact for a brief time while I spoke with her.

When I ask her to give me eye contact, she does not appear to be in any discomfort. However, I realize that my observation of her behavior is not a good gauge of whether or not she is comfortable with eye contact.

As for cherry picking the IEP, you hit the nail on the head. That is precisely my argument with my superiors when they tell me things like “this is what the mother wants and, this is how it has been done.” My point is that Chelsea is with us 7-1/2 hours per day, so why don’t we provide her transitional skills. The answer I get is the mother wants it done this way i.e. for her to attend regular classes. Therefore, I understand my superior’s point of view. Having somewhat of a rebellious nature, I tell them let’s do it anyway. After all, if she is attending regular classes, but if she is not producing any work, is that the best thing for her now.

The other reason is that others have told me increasing eye contact is one of her behavioral objectives. Incongruities like this one have raised a red flag for me as to the effectiveness of her behavioral program. I am new working with her, while others have worked with her for years. Either I am naïve and do not understand her behavioral program, or she is not receiving adequate training to transition out of high school.

If you ignored a part of her IEP in favor of other more important ones, what would happen? I have known some Special Ed teachers and I am pretty sure not always everything in the IEP manages to happen… I am more tolerant to eyecontact than a lot of autistics, but if someone stared into my eyes for long periods, that would freak me out and probably convince me that there was something wrong with the other person. (Sorry, this is just my opinion). I don’t even do that with my husband, but then we are both on the spectrum.

I wonder if (warning: total conjecture sort of based on stuff I have read in various places) maybe she can’t see what’s in it for her to start communicating. If there were a clear benefit for her, maybe she would type. Otherwise, it’s just “perform on command”, and many young people justifiedly dislike that.

I remember a family anecdote where a person didn’t talk (as a child) until he wanted to convey a very complex idea that could not be done by pointing and grunting. Then he came out with a full sentence, which probably scared the crap out of his mother.

I will continue to read first person writings about autism. You are right and I will strive to appreciate her overall communication with me.

When I began working with Chelsea, I learned that she desired to write sayings and poetry for greeting card design, and that she ultimately wants to write a book on autism. Toward these ends, she has assignments in a creative writing class here on campus. In addition to my personal desire to communicate with her, my charge is to help her develop her writing skills. I am trying to figure out how to do it.

N.—

Yes, I have learned much about the discomfort of eye contact. However, it is one of her Individual Education Plan objectives to encourage more eye contact from her. As I said earlier, I only began working with Chelsea a couple of months ago. This is one reason why I have concerns about her education and therapy plans.

Are you sure you know what it would look like to “reach” Chelsea? It sounds to me like she communicates with you every day. She responds to your words. She smiles at your sword fight. Even when she does not respond to you directly, she moves, looks at things, breathes, responds to the world. Perhaps you could see all of her actions as Chelsea being in there. I am not sure why “one lousy sentence” should count more than the ordinary communication she engages in every day.

If she is not showing any obvious signs of striving for linguistic communication, perhaps one possibility (among many) is that she doesn’t see linguistic communication as something to be specially striven for. Jim Sinclair has written that until xe was (12?) xe did not understand that speech was for communication and so did see much point in trying to learn it. And, as Amanda pointed out, many autistic people find eye contact highly uncomfortable, and it seems possible that Chelsea may not see staring long into your eyes as something to be specially striven for either.

I’d second Amanda’s suggestion to read a lot of the first-person autism literature, whether by speaking or non-speaking autistics. You sound like you’re doing your best for Chelsea, but autism is foreign to most people’s experiences, and there is a great adjustment of intuitions that has to take place.

A: Yeah the white one (actually white with blue and tan speckles) is mine.