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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.

Of course, the killing of the children was horrific act, carried out brutally.  I’m not denying that.

But is this a woman who casually killed her children because they were autistic?    Just an evil, evil woman who has no reason for killing her children other than selfishness and cruelty?    The reaction of the press, law enforcement, and the public (the public who don’t have autistic children) seems to be that she’s 100% wicked and there are no extenuating circumstances.  She should be killed off.  It is almost certain that she will be indicted, tried, and convicted of the capital murder charges already brought against her, and very likely that she will be executed.

It’s instructive to note that men who kill family members are rarely vilified in the same way as women who do so, and this is true even with men who kill small children; they are often prosecuted for lesser offenses (not murder) while women who kill a child are invariably prosecuted for murder.   (In the neighboring county, a man who killed an infant was charged with “injury to a child” and not murder;  an underage female babysitter was charged with murder for essentially the same action.)  A man killing an estranged wife/girlfriend and their children is not that uncommon–men have shot them, strangled, them, set fire to the house to burn them alive, etc.  Yet this very rarely causes the kind of public outrage that a woman killing a child does.    Had this woman’s husband killed her and the children, and then said he did it because he didn’t want his children to grow up disabled and miserable,  the tone of the reporting, and the reaction of the public, would have been different.   (In fact, when a man killed his disabled child, on those grounds, there was a lot of sympathy expressed for him–he was wrong, but people could understand his anguish over the future of that child.)

How could a mother possibly kill her children?    How a mother comes to that point varies, but ignorance, poverty, hopelessness, and poverty are often involved.  The ignorant, poor, and mentally ill (including depression from stress in that last) all have diminished capacity to think of, or arrange, alternatives to a situation.  They cannot see more than one or two ways (one of them being death) to change an intolerable circumstance.  The ignorant simply don’t know enough; the poor don’t have resources enough; the mentally ill can’t think well enough.  From what we know about this case, this woman could have been affected by all three.

And the alternatives that we might think of (and some have mentioned), like seeking help from CPS, are often not real alternatives in real circumstances–they are how things are *supposed* to work, but not how they really work.  CPS in Texas is an under-funded, over-loaded, agency in a state where the governor and legislature and much of the state’s judicial system are actively hostile to people in need and distrust and dislike CPS for “interfering with families.)    Its main concern is butt-covering:  children in Texas die (not just these) because CPS lacks the resources to check up on children considered at risk–not enough social workers, not enough money, not enough time per client–and because judges favor “keeping the family together” over protecting children, and because the foster-care system is also underfunded and overloaded, especially for kids with disabilities.   CPS workers are under attack from all sides (“interfering with families” by investigating, and the horror stories that eventually come out when they don’t.)

Realistic alternatives take money, and Texas does not fund basic services at a level sufficient for normal kids, let alone kids with special needs.  Unless parents have the  knowledge and resources to cope by themselves,they and their kids are SOL.  (I posted on LiveJournal about Texas and social services, and then  talking about autism )

Family, friends, and one’s faith community, if any, are similarly limited in what they can and will do.  Most parents of autists have experienced disapproval and rejection by some if not all family members (happened to us, too) and friends (ditto.)  If you come out of it with a few good friends, you’re lucky (we were lucky.  But I also lost friends who could not or would not accept M’s diagnosis or how we handled it.)  Faith communities often have explanations for a child’s behavior that a) are wrong (some refuse to “believe in” autism and insist it’s just bad parenting)  and b) result in the condemnation of parents and the rejection of a child with autism.  This is not limited to one religion.  In talking to parents of autists, I’ve seen this in three major religions and several fringe groups.  We experienced it in several congregations before finding a church home for our son.

Autism in the family also causes social  isolation–it is difficult if not impossible (impossible at some stages) to do the “normal” family things because either the child can’t handle it, or the outside world can’t tolerate the child.  Parents as well as the child face constant negative pressure from society.  It’s hard to make new friends,  go out to eat, to community events, etc. , when everywhere you go, you can expect to be stopped and questioned and lectured about your child’s behavior.

From various news reports, we know that this woman ’s husband died within the past two years.  Death of a spouse is a major cause of stress (even without children, but more with children, disabled or not) and the grief process impairs clear thinking.  We know she had lost her house to foreclosure, another major cause of stress, and a greater one when you try to move autistic children (for whom transitions and change are very difficult)  into an apartment.  She had been investigated at work (major cause of stress: criminal investigation, whether guilty or not), she had been investigated by CPS for alleged neglect/abuse (major cause of stress: investigation by government agency.)    Two-parent families with multiple autistic children find it difficult–a widow could easily be overwhelmed (autistic children require much more from parents than non-autistic children.)

There is no evidence that she had the resources–financial, educational, social–to provide what she needed and what her children needed. There is no evidence that she had any support system in place–that she had family or friends who were helping out financially and with child care, that she had a supportive faith community providing her with emotional, spiritual, financial, or social support.

If you wanted to create a situation in which a parent might see no hope of help in any direction, no alternatives to killing her children…you’re looking at it.   And if you’re convinced “there was help if she’d only asked for it”–prove it.  Go talk to other single parents of autistic kids, those who don’t have college degrees, those whose jobs have disappeared in the current recession, and see just how much help they’re getting, and how desperate they feel.  (Some of them have posted on my LiveJournal entries.)

It is a tragedy that those two youngsters died as they did.  It is a greater tragedy that their mother felt she had no alternative…that this society, in Texas and elsewhere, is willing to let parents of disabled kids struggle alone, without help or hope, as if they were undeserving criminals who needed to be punished for having an “imperfect” child.

Last week, M- told us he’d made a 90 on a test (whoopee!)  and we heard from people at church that he’s been telling them about his apartment.    The church office called this week and asked for his new address; I suggested that he email them with it instead of doing it myself.   So I sent him the church email address, and he emailed in his address.  Today it was his social worker in this county…I did the same, and he emailed me when he’d done it.

This week also, storms knocked the power out to his apartment for several hours (he told me by email afterwards)…but he was fine, though (from the tone of the email) annoyed.   I remember the years when he panicked when the power went off…and how, finally, he began to understand that power goes off…and comes back on.    Now it’s not a terror anymore, or even an “adventure”…just the kind of annoyance most of  us think it is.

His emails are shorter and farther apart…and I’m delighted, though I’d like more communication (what mother wouldn’t?) especially about grades.  But his independence is more important than my comfort level with uncertainty.

It turned out that between the initial email to me, and the later phone call, he had figured out that a) the mail was a utility bill from the city, and b) he had bought a stamp at a nearby convenience store, after asking at the apartment complex office where he could buy stamps.  And c) he had already written the check and mailed it back.

He had solved a problem on his own, using available assistance which he figured out how to contact, without a parent stepping in to suggest or guide.   And what is almost as important, he knew he had done something new that was good, he knew he had solved his own problem, and he was proud of himself.  He felt his own competence.   This also is new…although he’s gained in competence every year, he hasn’t shown real confidence in it, ownership of it.

If you have an autistic kid…you know how golden that is and I got blurry-eyed then and every time since I’ve thought about it.

Another thing:  we had driven him to the nearest supermarket to the apartment (something over a mile away) several times, and I had mentioned what might be a safe way to walk there, but he’s sensitive to heat and it’s been hot–so I didn’t think he’d do it anytime soon.   But Sunday, after church, he told R- he’d walked to the store, described his route there and back, and commented that it was good exercise.   And last week, though I waited in the city to see if he needed help getting back to the apartment from skating, he called from each bus as he caught it to tell me he was on the bus and fine.

So…does this mean he was ready for this move three years ago when he finished spec-ed high school?  No.  He was still scared of the idea then, and when he’s scared he freezes.   He hadn’t lived anywhere but our house yet.   The intervening three years got him to the point many high school seniors reach at 17 and 18, when getting out of their parents’  house (at least) and the town (if it’s not big enough) is a high priority…and ahead of many of them because we had the chance to have him out of this house and doing some of the things he’d need to do in his own apartment.  (This is why we hadn’t ever sold my mother’s house…) The trick has always been finding the moment when the underlying competencies have been gained, when he’s just a little frustrated with the status quo, and then showing him the open gate.    Sometimes with a little push (that first time at an autism camp) but as he grew, it was more just opening the gate and letting him find that the barrier was missing.

And if he’s really caught on that he can appreciate his own increasing competence as well as solve some of life’s typical problems, then he’s on the edge of being much more self-motivated and goal-oriented.

For those of you in the maelstrom of early childhood with a kid on the spectrum, those struggling every day with everything from meltdowns to toileting to eating problems to family members who are about as supportive as a wet noodle (only they sting) and friends who are sure you could have a “normal” kid if only you did what they tell you….the little bitty gains do eventually add up.  There is a light at the end of the tunnel.   It’s a miserably LONG tunnel, no denying that, but it’s not forever…as we’re finding out now (and three years ago I was thinking it was likely to be a dead heat between our aging bodies and his creeping progress towards independence.)

Aside from those contacts, he’s been on his own all week, going to class, doing his homework, etc.    He sounds happy.  He says he’s sleeping better now that he’d used to the place.   He’s got the bus route from campus to the ice rink figured out (as well as the bus route out to the bus terminus 20 miles from us, where we could pick him up.)     Email’s working back and forth…he sounds confident about his math class, and at least happy (so far) with his writing class.   He sounds motivated–emails about his work, his homework, etc.

I coaxed him into setting up Thunderbird (mail client for those of you who don’t use it)  with his new ISP himself–just sent him the detailed directions,  including the server settings–and he did it, and was very proud of himself.

So–granting that two weeks is just the tip of the very large iceberg of learning to live in the city–it’s going well so far.

On the parenting side, I’m having to discipline myself not to call all the time, not to check up on everything point by point.  Parents of NT kids have the same problem, but it doesn’t take as long for their kids to get to the “no more apron strings” stage,  so we (I in particular) have had longer to form the habit of control.

I was specifically forbidden to bring dirty clothes home when I was in college and–misunderstanding my mother’s point–I stayed up late the last nights before college breaks ensuring that only the clothes I had on were dirty when I got home.    Apparently, some of the children of my mother’s friends had both shipped dirty clothes home to be laundered (!!!) and brought home suitcases full of dirty clothes for their mother to care for.    I wouldn’t have done that; I’d been doing laundry since (um…when was it?  Years, anyway.)   Since M- has been doing his own laundry for some years now, I didn’t feel it necessary to give any dire warnings.

However, we did have additional chores ready for him (like hauling tree trimmings down to the brush pile on the land)  which he’s not that fond of (hauling branches down the field is just not that fun, admittedly) and he’s ready to go back after church and stay in the city rather than spend the rest of the holiday weekend with us here.    The apartment complex swimming pool is calling…and the kinds of chores his dad and I can think of for him here are not.   I think this is very healthy.

Aside from the need to go down every day and do something helpful,  the first week went well.    There were little glitches, but nothing major.   His classes start June 1;  he’s got all his textbooks and things.    I will need to go down at least once this coming week to set up his internet access to the college’s secure website for receiving important info and a few other things, but we shouldn’t have to be there every day.

We left M- there about 5:30 in the evening, with instructions to call if he had any problems.   He didn’t call.   In fact, from the look on his face as we left, he was just waiting for us to get out the door so he could get to the apartment pool.   Next morning we were here to receive the movers; I called M- when they left, so he would expect them in about an hour.   He sounded quite chipper.   R- drove down to pay the movers while I worked up here.

Tuesday, the internet guy was supposed to come, but didn’t–I had gone down to install the router after the internet guy left, and in the meantime picked up some of the usual things you find you’ve forgotten in any move.   Today, Wednesday, the internet guy has been and gone, and I’m about to go down and install the router.   M- hasn’t been online yet, and doesn’t sound (over the phone) like he really knows what he’s doing with that, so I may have to call the internet provider myself.

M- seems very happy in his apartment so far, though he admitted yesterday that he’s not yet used to it and hasn’t slept straight through.   While we waited, I read and he worked on reviewing schoolwork from last semester.   Although he was disappointed the installer didn’t come (we both were!)  all the work we’ve done on handling surprises, disappointments, and changes in plans really paid off–he was just disappointed, no fuss or anything.

So far, the move has gone very well and M- seems to be handling things pretty well.    Incredibly well considering what we started with 26 years ago.   Even 10 years ago.   So I have high hopes that this will continue to go reasonably smoothly.

A few more boxes will be packed today.    SO glad we’re moving a twin bed and not a double!   I was able to get mattress and then box springs into the hall myself, while the guys moved the red chair from the old big van into M-’s present address.   The bedframe had to go out through the window (very wide windows in front of this house) and no panes were broken.    It was a tricky maneuver, as the side rails of this bed do not come off with the tools we have, so the whole bed–with its headboard and footboard–had to be moved in one piece.   R- thought out how to do it and he was right.

M- is  still excited and at the same time apprehensive…perfectly normal feelings for someone in his situation.    Although I have done some of the work, and R- has helped muscle the big stuff here and there (the two of them are a formidable pair on that front!)  M- has done the most,  much of it independently.

Though if you’re going to have your inexperienced young person help with packing up–be sure they understand that painters’ tape will not hold a box together.   It can be interesting (!) when the bottom of the box comes apart.

Of course we’re thinking of hundreds of things we haven’t thought of before that he needs to know.  Don’t—but always do–but never do–but sometimes do, if it seems reasonable…   Too late now.  We need to let go and let him find out for himself.  Ultimately, when we’re long gone, he’s either got the ability to figure things out…or not.  And if not, better to find it out now, than later.

Best get back to it.  I still need to get the Elfa closet organizer out, the baskets nested, and the frame in the car.