……………………………………………………………………………..
lavanya.v.raghavan@gmail.com
2012/03/29 at 8:40 am

dear ms. moon,
i came across this article – “Outsourcing to the Autistic Rather Than to India” an thought of ‘speed of dark’ at once. I wonder if the people at Square One (the tech company) have read your book. there’s quite a lively discussion going as well.
the article link & text are pasted below.
http://www.businessweek.com/articles/2012-03-27/outsourcing-to-the-autistic-rather-than-to-india

I am not including the text here, as  said above, because the entire article was quoted and that’s against policy in my blogs.   However, it’s an interesting article on the use of autistic individuals to test software.  There’s a new pilot program called Square One.   So far all we’ve got are pilot programs here and there–in the midst of widespread unemployment for most skillsets, it’s hard to get anything bigger going.  But those in California might well check out Square One.

It’s also great that colleges are trying to engage students in discussions across the boundaries that quickly rise  between academic departments (especially, I think, between the liberal arts and the sciences) and between different social groupings of students.   The bull sessions in the dorms do give students a chance to discuss things with people they’ve known all of six weeks…but what they discuss may not be anything that can lead anywhere useful, especially with the diversity of backgrounds.   Having a common topic–a single book that they’ve all read–makes a reference point (other than the school athletic teams) for discussion.   I’ve noticed that at the colleges where I’ve spoken about The Speed of Dark, and I’m sure it’s true for other books selected.

And in general, it seems that colleges are choosing better books for freshman reading programs than they did when I was headed that way.  We were given a list of books to read the summer before we arrived, and most were intensely depressing.    (I also had four wisdom teeth removed that summer, and got sick, so that may have affected my reaction.  But none of the books offered much hope that problems could be coped with–whereas the books written by the other authors this past weekend all had that hopeful–but not shallowly hopeful–position. )

I’m grateful for the opportunity to attend this conference and meet the people who help choose the books…to learn more about their reasoning when they look for books, to get a feel for how my book fits or doesn’t fit their needs, and how an author’s campus visit “works” within the concept of a Freshman Year Experience.     (Because they aren’t all the same.   Every institution–and every incoming class in every institution–is unique.    And it’s clear that the faculty and staff I met were all very aware of their institution’s needs. )

It was a little startling to come home and find that I’d been Tweeted about, possibly even during the events.  (DUH.    Why surprising?  Probably because my netbook died shortly before the conference and I was flying along without my daily dose of internet navigation…no email, no Twitter, no blogging, no surfing.   No wonder the sock I was working on grew several inches!)

The other books being showcased were all nonfiction, and the other writers were all male.   It’s certainly not the first time I’ve been the only woman among the men, but usually we’re all writing in the same genre.  This felt very different–but still a lot of fun.    They videotaped our speeches at the Random House luncheon–I hadn’t anticipated that, but the years of speaking to groups of various sizes and in front of other cameras reduced the “Omigosh, what now?” factor.

And the Random House team is fantastic…such support!    If a pen clogged, another one appeared in front of me instantly.  Books flowed from boxes to the signing tables as if by magic.    And such individually pleasant people to work with, as well (some very efficient people can be stressful to laid-back country-gal writers, but not these–they were people I’d love to know better.

The day after a convention or conference is always super-busy, so I’ve got to rush off and keep after the chores, but…this was a new experience I really enjoyed.   (Fajitas at Casa Rio on the Riverwalk didn’t hurt either.  When we lived in San Antonio we couldn’t afford to eat on the Riverwalk often, but Casa Rio’s Tex-Mex was always good and reasonably priced.)

Many people expect children to be available to be touched, hugged, kissed, and cuddled at will.   Strangers will pat a child on the head or shoulder and expect the child to accept the touch without complaint–even to smile at the stranger.   Relatives definitely expect a greeting and some sign of affection, and expect to be able to show their affection by touch.    That was certainly true in my husband’s family–my mother-in-law simply refused to believe that our son did not like her tickling his toes or hugging or kissing him.

As the article I linked to suggests, it’s important to have conversations about expectations from visiting family before they arrive.  Long before and repeatedly, if possible.     The more resistant they are to the boundaries parents set–and the boundaries the child might set–the more you might consider whether the visit is really a good idea.    Yes, families are important–but they can be important bad influences as well as good ones.    If they’re intent on doing things the parents know are hard to impossible for their child to handle…then they’re no better than any other person, stranger or not, who won’t respect boundaries.

Respect is a two-way street.    Kids  learn real respect from adults who show real respect to them–they learn respect as an interpersonal skill by example.    And that includes asking before touching, accepting that a child is not a toy to be played with as an adult pleases.    What they learn from adults who grab them, muss their hair, insist on hugging or kissing when the child doesn’t want to is not respect or affection but that even in the family they aren’t safe.

Advocating for a child is just as important within the family as outside.  Early on, I didn’t do enough of it–in part because my own background had not provided me with a good understanding of boundaries and my right to set them.

One of the memories is of someone who arrived about half an hour after she died–unaware of that fact–to visit her.  When I told this woman, she was of course shocked, and then blurted out the least suitable thing she could have said:  “You should know that although everyone in town thinks you’re a bad mother, I think you’re doing the best you can.”  That would be rude (and unanswerable) any time, but right after my mother died?   I was speechless with shock.  She went on to detail why people thought I was a bad mother (my kid was autistic: proof enough, 25+ years ago, that I was a bad mother, but she was full of specific things I was supposed to have done or not done.)

This is definitely something not to say to parents of disabled children.

But this is only one example of the kind of thing people say to the parents of kids with disabilities, and only the starting point for this post on “What Not To Say.”   Because remembering her has brought up the memory of so many more things people said that were hurtful–and the experience of other mothers who’ve told me about their unhappy experiences with verbal attacks.    These cluster in several categories:

Medical Questions:  Diagnosis, Prognosis, Causes:

“What’s wrong with him/her?  Why isn’t he/she {talking, walking, looking at me, whatever]?”

“Did you take drugs during the pregnancy?  Did you drink?  Smoke?   Were you promiscuous?”

“Did you know about this when you adopted him/her?”

“Will he/she always be like that?”  “Will he/she ever [walk, talk, read, go to school, whatever}?"

"Whose fault was it?  Which side of the family did it come from?"

"Who is his/her doctor?  Who is his/her therapist?   What medicines is he/she on?"

When you see these laid out separately, it's pretty obvious why these questions should not be asked: they're rude, intrusive, arrogant--they assume the speaker has a right to know personal family details.  Some of them directly attack a parent (usually the mother) with the presumption that she must have been responsible for the disability.  Some of them  imply that the parents aren't doing enough by demanding to know what medical care is being provided, by whom, etc.

Curiosity is not entitlement.  If you're not on the medical team or a close family member (and even then, you could ask more tactfully) it's none of your business what the diagnosis is, what the cause may be, what the prognosis is, who is treating the child and how.

Arrogant Advice, Accusations, Assumptions:

These come more often from friends, relatives, and close acquaintances, who think they know more about the disability and the child than the parents do, but sometimes a particularly arrogant and bossy stranger will butt in if there's a problem in public.

"If you would only spank him, he wouldn't act like that."

"If you would just make him say his words to get something to eat, he'd talk."

"If he/she were MY child, I would [some chunk of advice] and that would fix his/her problem!”

“You’re overreacting; you should lighten up and just let him/her alone–there’s nothing wrong with that child but you just don’t know how to handle him/her.”

“He/she’s just a little slow; quit making a big deal out of it.”

“He/she doesn’t need all that fancy therapy–just good old-fashioned common sense parenting.”

“You’re too harsh/strict/overly controlling.”   “You’re too lenient; you let him/her get away with things; you’re spoiling him/her.”

These and similar statements assume that the parent is ignorant, stupid, lazy, or incompetent, and that there’s a simple solution to the child’s problem if only the parent would use it.  (Any question or statement with “just” or “only” in it implies exactly this.)   The speaker has a vision of child-rearing that’s a lot like cake-mixes….children are standard mixes in boxes, and adding the parental equivalent of two eggs, some vegetable oil, and water, then following directions on the box will produce a typical child.   Your kid isn’t typical, and you aren’t doing the typical things, so obviously you’re an incompetent cook…er, parent.

Personal Guidance and Feelings:

An astonishing number of people who have never had a disabled child are sure they know how the parents should feel and react to all situations.   Family members and friends–especially those who have children near in age to the disabled child–are fond of denying the parents’ right to have the feelings they express.

“You should be glad it’s not worse. “   (I am, but it’s still hard when my kid is crying in pain, I’m not getting more than 3 hours sleep a night, the bills are mounting up….)

“You should be glad your other children are normal.”  (So I shouldn’t care that this one’s needs rob them of my attention and family resources?)

“You should have another child; he/she might be normal.”  (Grrrr!)

“You shouldn’t feel like that.”   (whatever “that” the parent has confessed to, most often to not being a Pollyanna, to having felt grief or sadness or  worry about the future.)   (And you can turn your feelings off and on like a spigot?  Aren’t you the person still seething over the teacher who called your kid spoiled two years ago?)

“It doesn’t help/isn’t good for you to have these negative feelings.”   (When did you get your doctorate in psychology?  My doctor says it’s good for me to admit negative feelings.)

“Look on the bright side.”  (I’m cleaning fecal matter off the walls for the fifteenth day in a row.  WHAT bright side?)

“God doesn’t give anyone more than they can handle.”   (O  Lord, save me from the comfortably pious.)

“It’s time you moved on and quit dwelling on this.”  (I’m living with it 24/7/365–there’s no place I can move away to.  If you had a clue, you’d understand that.)

What these statements really mean  is “I don’t want to be bothered with your problems,”  or “I don’t want to have to think that you might envy or resent me because I have an easier life.”   These statements do not help the parent

It is normal for parents who have a disabled child to have conflicted feelings when seeing other children progress past their child.  Every birthday party, every first day of school, faces the parent with the reality that other children are growing typically,  other children’s parents are enjoying watching their children grow typically–anticipating and enjoying the markers of growth and development….while they themselves are seeing their child struggle to achieve what these children do easily.   Do they hate the typical children and wish them ill?  No, of course not.   But they do wish their children had less struggle and more success.    Parents anticipated a healthy, typical child; they are naturally, inevitably sad when that’s not what they get.

Expressing those feelings is an essential part of getting past those feelings–of connecting with the real child, committing to the real child, and being full partners in helping that child achieve all he or she can.    It is for the parents–not anyone else–to work through their feelings and find ways to do what must be done in spite of them, because of them or just with them.   Being told they shouldn’t feel what they do feel does not help.

False Praise:

“I just don’t know how you can stand this…I couldn’t possibly….” and its many variations.

This is all about the speaker, who wants to believe that the parent is so far on the road to sainthood that the speaker doesn’t have to do anything to be helpful (saints don’t need help) or consider what the real cost to the parent might be.  Parent is a different order of being and therefore…the speaker can congratulate himself/herself on being humble without actually having to do anything useful or suffer any inconvenience.   The “I couldn’t possibly do what you do…” types never actually offer to help…they’ve already said they can’t possibly, and they mean it.

Real praise is rarer, but precious: the woman in the shoe store, helping me find shoes for our son, who said (when my husband had taken our son for a walk around the store to try out one pair, “You’re so good with him.  It’s great to see a parent being patient with a child with problems and not yelling.”    That lifted my spirits for at least two weeks, and there’s a little glow coming off it over 20 years later.

Show-offy Religion:

We’re lucky in having a faith community now that’s supportive of us and our child–and of other families with a disabled family member.  We didn’t always have one (some of the comments above were laid on us at the other places.)   In the context of our present faith community, we have prayed with others, for others, and have been prayed for: with our consent, and in the traditions of our faith community.  But we’ve also been targeted by some people who think spotting a disabled or sick person is an opportunity for them to show how pious they are.

“We’re going to pray for your child.”   We were in a restaurant with our son one day when three adults from a nearby table got up, came over, and announced that they were going to pray for him and linked hands.  One  grabbed hold of our son’s hand, and the others held out hands for us to hold.   Naturally, half the other people in the restaurant stopped eating to watch.  Our son, who at that age didn’t like being touched by strangers,  turned red and made an unhappy noise, trying to yank his hand free.  Through clenched teeth I said “No thank you.  And please do not touch our son; he doesn’t like it” and one of them said cheerfully (and too loudly) “That’s all right; we’ll pray about that.”    No.  We got rid of them, and they were unhappy about it, and none of us enjoyed the rest of that meal which had started so well.   This was not the only time–several times when our son was very young (and cute–and I don’t think that was accidental) I was approached in public by strangers who wanted to pray over us.  I have heard of people being accosted by people from another religion, not just another branch of their own, who assumed the parents should be delighted to have someone pray over their child in public.

No.  Do not do this.  It is rude.  It is offensive.  And it is harmful.

If you want to say a private prayer for a family you see across the restaurant with a disabled child, no one’s going to get upset.   If, in the context of a shared faith community, you feel an urge to pray for a child or family, the traditions of that community will suggest an acceptable way.  But interrupting families to push your desire to feel important on them?  No.  It’s rude, it’s arrogant, it’s cruel.

Some faith communities are not–sadly–supportive of families with disabled children, especially those whose disabilities cause unwanted behaviors.  One of the commoner problems families face is rejection or disapproval by their faith community at the very time they need its support.    This is not limited to any one religion or any one group within a larger religious community–but it is a serious problem for the affected families.

What are some Good Words that could be said instead?

For strangers,  not much–a friendly smile that recognizes the family and child as real people is enough.   For friends and family, recognize that the parents are the experts about this child.  If you’re close enough to feel you have a right to know more, ask in a way that does not accuse them.   “I notice Johnny isn’t talking–does the pediatrician have any ideas?”  Let them tell you as much as they want; be alert to signals that they’re not comfortable talking to you about it yet.  If they are, listen and learn–and then ask questions that show you’re willing to learn, in a tone of voice that doesn’t accuse the parents.

“I don’t know much about that–can you recommend something I should read?   Or do you have time to explain?”

“OK, I get that he’s on a special diet…so when he comes to visit us grandparents, what should we know?”

“What kind of toy would she enjoy this holiday/birthday?”

Praise the parents for what you observe them doing:   “You sure are patient.”   “You sure understand his/her speech better than I do.”   “You know how to make him/her happy.”  “You’re doing a good job with him/her.”   “You do a good job balancing your attention  between him/her and the other kids.”

Offer to help:  “Would you let me take him/her to the park on Tuesday afternoons?”  “Want some help getting the wheelchair into and out of the car when you go to therapy sessions?   I’m always around in the mornings.”   “If you could use an extra hand going grocery shopping, let me know.”   “You know I have a shop in the basement–if you can show me what he needs, maybe I can build it.”   Or, “I’ve been trying to think how I could help–but I don’t know anything about [child's condition/ parents' situation].  What do you need most this coming week?  I’m free from one to three Tuesday through Friday.”  (Making it a specific time-frame indicates you’re serious.)

Find something positive to say about the child every time you encounter the parents:  he/she is cute, or said “Please” before grabbing a cookie,  or you saw him/her climb up a step by himself.   Parents hear negatives all the time–they’re always being told how their child does not meet developmental markers on time–so anything positive is a pot of gold that can refresh their spirit.

If a parent confides a feeling that makes you uncomfortable…remember that your discomfort is your feeling–it’s for you to deal with, not to push that discomfort back at the parent.   Listen with empathy.   Accept that people have feelings you don’t share–but that are real, and necessary for them to cope with.   “That’s tough,” works for a lot of situations–acknowledgement of the other person’s reality and that they find it difficult.

It takes no more effort to shape your lips around Good Words than around Bad Words…but it can take some effort to realize that some of the words uttered were–intended that way or not–Bad for those who heard them.   The effort is worth it, on the recipients’ end of things…if you want to keep your friends who have a disabled child, if you want to be welcome in your relatives’ home…better start pruning back the Bad Words and letting the Good Words flower.  Like many other parents of a disabled child,  I finally divested myself of the so-called “friends” and “relatives” who persisted in giving us more grief.

Topics keep coming up, and I make note of them and sometimes even start blog posts over on the writing side of the computer (drafts of posts are in the vaults of the data drive.)    But they haven’t made it through editing and over here.   I’ll be using up these first, in hopes of having time to do some others later.    They’ll be in order of  how finished they are.   (Yes, that sounds lazy.  Yes, it probably is.  But I have a fiction book on deadline and that fiction buys the groceries and keeps power to the computer.)

Fear of the child being rejected–or the parent being labeled a bad parent–or both–puts parental fear in control of parental decisions….and that’s not healthy.    This brilliant post by Michelle Sagara offers clear thinking and creative approaches to the challenge of overcoming parental fear in the best interests of the child.

In fact, several other posts are equally brilliant (I found myself nodding along–some of her strategies were just like mine, and some were better.)

Here’s the first one on bullying in junior-kindergarten and another about the kinds of social difficulties kids on the autism spectrum have .

Although kids on the autism spectrum do have specific and characteristic problems that make interaction with them (when young, especially) difficult for many…the parenting problems that Michelle discusses are common to more than families with someone on the ASD spectrum.   Her analysis of early childhood social settings and social groups is applicable to many situations.

———————————-

First, a quick introduction:  I am a counselor at the Disability Resource Center at Portland State University, the largest four-year public college in the state of Oregon.  Elizabeth asked me to guest blog about transition from high school to college for students on the spectrum, which I gladly accepted.

Abbreviation – OSD = office for students with disabilities

There are some major differences between high school and college, which can be tough for students on the spectrum to navigate.  Some of those differences include:

High School:

–Students’ time is structured and teachers provide reminders regarding deadlines

–Teachers and school counselors collaborate to support students on IEP or 504 plans

–Student progress is monitored

–Students are expected to learn facts and develop skills

–Curriculum may be modified for student success

College:

–Students are expected to manage their own time and be aware of deadlines as described in the syllabus

–OSD determines appropriate academic accommodations, and the student is expected to communicate with professors about any anticipated needs

–Student progress is not monitored

–Students are expected to apply knowledge and analyze information

–Curriculum is not modified for student success

Students on the spectrum are encouraged to contact OSD and set up academic accommodations.  While accommodations are matched to the nature of the disability, they are also matched to the individual student’s needs.  This means that determining accommodations is as much art as science, and OSD professionals may not get it quite right on the first try.  Students need to be assertive and self-advocate if the accommodations don’t work as well as expected.

I’d love to say there’s a list of accommodations I commonly use for students on the spectrum, but there isn’t.  Determining academic accommodations for students on the spectrum is much more art than science.  I will therefore talk about what academic accommodations look like in college and make some suggestions.

In college academic accommodations do not fundamentally alter the nature or essential grading criteria of a course.  Accommodations are meant to modify how the student demonstrates the knowledge and abilities needed for the course.  Extended time for testing, a private room, a note taker in class, use of a laptop for in-class writing, and textbooks in alternative formats are examples of modifications to how students demonstrate knowledge or ability.  For students on the spectrum, these standard accommodations aren’t usually enough.

They don’t address some fundamental differences, such as understanding gist of story vs. understanding individual parts; focus on big picture, not nuances (see the trees, not the forest), metaphor and slang, and communication differences.

Some additional accommodations the OSD professionals can consider are: provide all assignments in writing and verbally; use of a laptop for in-class writing; use of assistive technology.  Assistive technology needs vary from person to person, but can be extremely beneficial.

The question for OSD professionals becomes: is providing this student with the answers to these questions a fundamental alteration to the nature of the course or grading criteria?  The answer can be found in applying the principles of universal design: The instructor can include detailed information about what will be required for in-class writing assignments on the syllabus, or provide this information verbally to the entire class.

This leads me to a useful link: http://www.washington.edu/doit/.  Students and OSD professionals can use principles of universal design when communicating with instructors and requesting assistance.  Incorporation of universal design makes classes more accessible for all students.  Sadly, the information for students on spectrum is somewhat lacking.

Which leads me to a useful title: Preparing to be Nerdy Where Nerdy Can be Cool: College Planning for Students on the Autism Spectrum. Lars Perner, Ph.D.  If you do an internet search on this title you’ll find a USC Marshall page with a ton of useful information.

I have a lot more to say, but this is getting pretty long.  I’m happy to provide further information if it is requested.

That’s true whether it’s a four year old who doesn’t talk, or a seven year old who isn’t toilet-trained, or an adult (in age) who still acts like a child (in years.)    Even with a steady (but not typical)  gain over the years, the downs are bothersome.

Last week, M-, who had been doing very well this summer,  had a down that not only upset him, but the faculty, and of course us, his parents.   It’s once more instructive in terms of what autistic students may or may not understand about the expectations college has for students in more areas than academics.

M- is typically (not always) as good or better  than the average male college student about personal hygiene issues: showers daily, brushes teeth, wears clean clothes daily, etc.   He’s not so good about recognizing when something’s worn out (but I wear old clothes at home because they’re comfortable.)   M- keeps his apartment clean and tidy.   M- is diligent about showing up for class on time, with all the materials he’s supposed to have: that falls into the  “rule-following” side of his nature.  He does his homework and all other class assignments.  But–that’s not enough.

Gaps in social skills and  language skills show up not only in his language based-classes, but in the real-life situations that result from those gaps.   He can misunderstand verbal instructions and explanations, as well as the nuances of conversation.   He is unsure when it is OK to ask questions, and if he tries to ask when he shouldn’t, and is told so, he’s then easily convinced that it’s not OK at all.    He is unsure when certain kinds of question/comment are OK (for instance, when it’s OK to mention “feelings” as opposed to an emotionally neutral topic.    A communications success (he got his message across, was heard, and a desirable outcome resulted) may lead to using the same message, at the same intensity, in situations where that is not necessary or ideal.

Some of these things we had worked on with M- for years–they appear to be semi-permanent gaps where little progress has been made for a long time.  Others are the result of  our not understanding what he didn’t understand when we tried to teach…and his not knowing that he didn’t get what we meant.

In the current situation, the college wants to be helpful, but they seem to have a skewed idea of what help he needs…although they told us they’d had quite a few students on the spectrum, I am guessing they’ve had students with Asperger’s (who typically have social skills gaps but not gaps in language comprehension or expression) and for students with autism they’re relying on (probably outdated) descriptions.

M- has done well (A and B grades) in classes where the objectives and standards are clearly set out, ideally in writing,  where there’s quick and frequent feedback on right v. wrong performance  and where practicing the skills develops what is needed for the next level.  Math, in other words.   He has struggled in classes where the standards are not clearly set out, where feedback is lacking or can be misunderstood,  and where practice in precursor skills (vocabulary, grammar) do not lead readily to the next level (more sophisticated reading comprehension and writing.)

This is compounded, when he tries to express his confusion and ask for help, with his difficulty in verbal expression.    Most recently,  in a situation where his essay, written in class, was deemed unacceptable by his teacher, he subsequently expressed his disappointment and sadness over this in a way that scared the teacher and counselors.   What they did not know about him (the past history and his difficulty in choosing appropriate levels of intensity in many social situations) led to their deciding he needed less academic pressure.  Our parental reaction (knowing all that history and stuff) was that he needed better tools for handling academic pressure and more explicit instruction on how to express negative feelings without starting a panic.

Another up seems to be succeeding last week’s down, and on the whole the trend has been upward since he moved to the city…he has coped with many of the challenges of living alone and going to classes very well.    Since he follows rules well,  our response last week was to provide him with a set of guidelines for what to do in similar “down” situations  (specifics on communication, self-care, etc.)     He still may not pass the writing class this summer, and will have to re-take it in the fall, but his overall advances outweigh that.

I wish our son (and every kid) could have just ups and upper ups when it comes to growing up…but the reality is that all of us have downs as well (I sure did) and part of reaching upper ups later is learning to get over the downs when they come.

I didn’t bookmark the other sources of information I’d found, so now (of course) I can’t find them, to see where they got theirs.  My friend thought I’d confused two different tragedies–another killing of a child by a mother occurred not that far away, with different circumstances.  Whether I conflated stories about two different killings, or the sources I read had already done that, it’s still a mistake, and I failed to check deeply enough.

So death of a spouse was not part of the problem.

I apologize for sloppy fact-checking.