My autistic son considers his own future

Ash’s future….now that’s a loaded topic.  Forget living day to day.  Most of the time we live hour by hour, minute my minute….some days, living second by second isn’t at all an exaggeration.  With the depth of his sensory issues, let alone how they and the manifestations of his Autism are affected by even things as uncontrollable as the sky, even Ash can’t know what he’s going to be capable of, or not capable of — for better or worse — from one moment to the next.  That makes our parental job of actually PLANNING, just a touch more interesting.  Do you know what I’m usually doing until 3 or 4am?  Preparing for the morning that will be starting in 3-4 hours, and the 10 possible ways it is most likely to go, based on how the last few preceding hours of Ash’s awake time went.  Maybe he will be capable of startling eloquence.  Maybe he won’t be able to do more than make squeaky shrieking sounds and keep repeating whatever single word or short phrase his head has most recently become “stuck” on trying to process(Right now “forget” and “understand” are the words used, and misused, ad nauseum.)  Maybe he’ll be able to pick his own clothes and completely dress himself.  Maybe getting him dressed in the morning will resemble a “Moving People” skit from Whose Line Is It Anyway?  Perhaps he’ll be whining for help with everything, or desperately insistent on doing everything all by himself, regardless of how the preceding set of options fall.  Maybe he’ll maintain his sweetness, his gentleness and his infectious happiness regardless of what challenges the day and his brain throw at him.  Maybe he’ll be consumed by a burning frustration at feeling like he just can’t seem to get out of bed the “right” way, and before he’s made it out of his bedroom, he’ll already be unwittingly acting out scenes from horror movies he’s never seen.  Even the simplest of things ‘going smoothly’ usually takes preemptive excesses of psychological and environmental manipulation on my part, and if that’s required to get Ash through needing to wear galoshes TO school tomorrow but sneakers once AT school, how in hell can I plan for, oh, say, puberty?

All that is without getting into the “big” questions, like whether or not Ash will ever be able to have a romantic relationship (kindergarten crushes….literally….aside), perhaps even raise children some day.  Will he even be able to live independently, or should we keep working on getting out of medical debt and repairing our credit so we can buy a duplex townhouse and try to live forever, because the news — and what never makes it into the news — makes it too terrifying to even contemplate having to rely on anyone else for his responsible care?

Beyond all that, what does Ash want for his own future?  Regardless of neurological circumstances, one can only take just so seriously the claim of any six year old boy to his Mommy that she shouldn’t worry, for he will stay together with her forever and ever.

Brief tangent here…  When I was a little — and not so little — girl, and was asked what I wanted to be when I grew up, my answer was always, “Happy.”  Oh, if asked more specifically about career aspirations I could easily enough spout out one goal or another, but that was never my default and truly honest answer, if the question was more open-ended.  And, while it would have been foolish to get into explaining and expounding, my notion of what Happiness was likely to entail involved the defiantly optimistic ideal of having Love….love from others that I could believe in, and love for others that I didn’t have to second-guess.  Friendship, yes.  Romance.  Parenthood.  As my mother always said, I always made things more complicated.  ::wry smile::

While my dreams of what I wanted for myself in life were crafted from the harsh awareness of things I knew I most certainly did not want, Ash appears to take after me when it comes to the goals his mind instinctively leans towards, and yet….and all those who know Steffan and I will tell you it’s not so daring for me to claim it….Ash’s inspiration is, you might say, far more direct.  With his common failure to fit into stereotypes of Autism, Ash often enough expresses not just an expectation to, not just an interest in, but the desire to end up married and a parent.  “I’m too little to get married, but I need to grow up and get older so I can have a wedding,” Ash once said.  Why, so he can dance his pants off?  No.  “Because that means I’m supposed to found my love-match like you and Daddy.”  Nope, he doesn’t take for granted that it always happens.  After confirming that so-&-so and so-&-so are husband-and-wife or husband-and-husband (the combinations he personally knows), he’ll usually follow it up by asking me if the couple are, “Love-matches like you and Daddy and I.”  So, when he grows up, he can find his love-match and get married.  “And then I think I can be a Daddy, too.”  Oh, yes?  “Daddy, you are Mommy’s big love, and Mommy, you are Daddy’s big love too.  And I am your little love.  And we are all love-matches together in our family.  And so when I get bigger I can have a love-match and then it will be my big love and I will be big so I can be a Daddy so I will have a little love.”

□ Does the patient evince an interest in other people? 

□ Does the patient develop emotional relationships? 

□ Does the patient try to express his feelings

□ Does the patient…

Yeah, screw that.  My child is autistic and he is totally into the idea of forming relationships with other people of distinct strengths and types.  Maybe that’ll change as he ages, as it might with any other child, but that’s the thing….“As it might be with any other child.”

In fact, he’s been expressing hopeful intentions of growing up to be a husband and father for longer than many of his typical peers have been telling people that they want to be a princess / astronaut / dinosaur rider / doctor / etc., and Ash is certainly no more ignorant of examples of jobs, fantastical or otherwise, than he is of examples of relationships.  Until now, however, he has never been able to answer the clichéd question of what he wants to be/do when he grows up.  If someone tried asking him, they generally got a somewhat blank stare and a reflexive so-long-as-I-smile-at-them-and-they-smile-back-it-will-all-be-good smile.  If they kept pressing and providing cues, he might get as far as telling them he’d be [one year older], or that he’d still be [his name or one of his nicknames].

You caught the, “Until now,” up there, though, right?  Mmm hmmm!  That’s right, Ash has, for the first time, considered, concluded, and expressed a desire to have a particular sort of job when he grows up!

“Mommy, when I grow up I can be a zoologist like Jarod Miller, because I love learning about animals and then I can always see them.”

You know what?  Aside from him needing to learn how to control his excited jitters and managing to move less erratically, I see no reason why he couldn’t rock at it.

 

365 days a year of autism awareness, and one year of triumph

This was Ash's NICU release photo. He was 4 weeks, 2 days old -- or, gestationally, not born yet.

Ash has been inspiring the “defiant will to thrive” noted in my banner here, from the day he was born.  After all, he wasn’t expected to survive infancy, but here he is, six years old.  Once upon a time our Little Prince came home in a plush, blue, baby blanket patterned with stars, and now he makes a wish on his star-shaped swag lamp every night as part of his bedtime routine.  It doesn’t seem like that long ago that doctors were advising me to be wary of his first teeth, and now he’s lost four of them.  FOUR!  And he got in his 6-year molars before that even began.

During a rather drama-delayed bedtime on 6/3/11, Ash FINALLY lost his 2nd tooth. A minute or two later we'd gotten the bleeding to stop, and a few minutes of letting him ham it up for the camera and distract himself from the discomfort later, all was well with the world and he was ready to pass out. But first, we had to leave the tooth out for the Tooth Fairy! This faerie candlestick is where we put his teeth. It waits outside his bedroom door, so the magic has a better chance of not waking him up. "The Tooth Fairy always knows where to look and find my teeth!" says Ash.

Although some certainly feel it a lot more than others, there hasn’t been a day which wasn’t a challenge.  If it wasn’t for our somewhat uncommon view of goals, it would have been all too easy to spend most of all-this-time feeling like we weren’t getting anywhere.  We have, though.  Day by day….Oh, who am I kidding?  It’s usually minute-by-minute, if that!….and inchstone by inchstone, Ash has come so, so far.

Over this past year, perhaps, he has come the furthest of all.  At the least, his journey has had the most landmarks big enough for everyone….Ok, sadly, although it shouldn’t be this way, it’s really more ALMOST-everyone….to recognize.

A year ago, meltdowns were still a big problem for Ash.  Lasting an average of 45 minutes for the pure meltdown, an hour and a half total including the spiraling lead-in and the cool-down period afterwards, his meltdowns did not always come daily any more, and rarely came multi-daily, but we could probably still count on a few full meltdowns a week.  His whapping (it wasn’t quite hitting) reflex, a violent sort-of-stim which defied his non-aggressive personality and took over whenever he started to overload at all, was a regular challenge and one of our biggest worries.

Today, meltdowns don’t even happen every week, and it becomes easier and more common to see Ash struggling to control the ones that do.  All-out, my-child-is-possessed quality meltdowns are extremely rare.  There are still some days largely ‘lost’ to short-circuiting, but it rarely spirals far out of control.  The whapping has become so uncommon that it’s always a harsh surprise when it does happen.  Ash is usually able to exert enough self-control and redirection that if he needs to vent that way, he will pull himself back from whoever might get hit, keep his arms tucked in or raise them over his head, and channel some of the need into jumping at the same time.

A year ago, Ash only ate texture extremes.  His diet was comprised largely of plain vanilla or chocolate pudding (totally smooth and creamy) and a few kinds of cracker (totally dry, crunchy, and no grain irregularities).  That one of the kinds of cracker he ate had some residue on it from flavoring, was a big deal.  He drank whole milk, occasionally water, through a straw-sippy cup.  Anything else getting into him was rare and in miniscule proportions, and that was with and after years of effort and innovation, feeding-therapy-wise.  The majority of his nutrition came from his “magic dust” — a vitamin & mineral fortified protein powder we mixed into his milk.  He semi-regularly had regressions — now it’s only the smooth-&-creamy stuff, now it’s only the dry-and-crunchy stuff, now he’s lost the motor control to bite, chew or suck things off a spoon and is stuck on a liquid diet, whoops, now he’s starving himself completely.

"This pickle is very....sour?" said Ash of his second Vlassic Kosher Baby Dill, bought on 7/12/11 and requested by him before it had even made it into our fridge at home. Two days prior he had randomly informed me that he needed to try, "A green, bumpy pickle."

Today, Ash’s diet is still very limited, but it’s leaps and bounds and possibly a few TARDIS-jumps ahead of where it was.  We’re able to halve the amount of his supplement that we give him daily, without nutritional detriment!  Peer modeling on the peripherals of feeding therapy at school has clicked open the final lock which was keeping him from moving forward.  He regularly at-least-tries whatever happens to be on the menu at school, an increased number of accepted foods have generalized to home, and he’s become more willing to push through trying new things at home and out and about with us, too.  Occasionally, something really wild happens, and we even all eat the same thing, at the same time!  He now consumes substantial quantities of things like all-beef hot dogs, breaded chicken, deli slices of ham, pizza, bagels or rolls, ice cream cones, orange or apple slices (the parts of the apple slices with skin on them, anyway)…  He’ll drink plenty of orange juice, chocolate milk, or milk mixed with a generic V8Fusion (100% multi-fruit-and-veggie-juice good-for-you-ness) in one of the berry-based flavors.  He still eats mostly with his fingers, and the one utensil he’s comfortable with — the spoon — he can still only really handle if he’s eating something that sticks to the spoon, but thanks to the training of AutoSeal Tumblers, he can now drink from standard, open-topped cups, and even pour for himself if what he’s pouring from is light enough.  The other day, after he was willing to share my black raspberries but couldn’t quite figure out, motor-wise, how to eat them, he switched to licking raspberry preserves off a spoon.  Raspberry preserves, with their plentiful and not-exactly-tiny seeds mixed in, in such an obvious way to eyes and tongue.  There was a time, during his smoothie phase, when a single, miniscule, strawberry or banana seed that hadn’t 100% liquified or been caught by the three rounds of straining, could ruin things for days.

A year ago, Ash was not yet potty trained at all.  He had spent years in the early stages of readiness for it, had most of the elements, but lacked some final “click”, some last, vital connection.  Thankfully he is quite thin, or he would have run out of diaper sizes long before he stopped needing them!  Considering the “rise” in Autism, and the fact that comorbid sensory issues make potty training a common problem for autists, I’m kind of surprised that the major brands and generic brands of diapers have not yet realized that there is demand for something larger than a toddler-sized diaper.  In any event, once again, peer modeling — provided in terms of toileting by his special-needs pre-K class last summer — proved to be the key to moving forward.

Today, he is 90-95% day-trained for both urination and defecation, variable by what kind of sensory day he’s having, how distracted he is, and, yes, random, set-back-y trauma.  He will use full-sized toilets at school, at home, or out and about with us.  Self-motivation to the bathroom is at maybe 70-80% at home, 50% if elsewhere.  He wears underpants all day long, unless he’s so sick that his system has far too much to pay attention to, to notice little things like the need to void.  He still uses Pull-Ups at night, but if he keeps on his current track, he might be ready for night-training by the end of the summer.

A year ago, Ash was fairly reliably sleeping through the night (which wasn’t such old news as most would hope), and the bedtime fight was finally starting to be less of an extreme physical, mental and emotional war.  With his system regulation aided by the introduction of SAD light therapy, he had less of a built-in resistance to sleep itself.  Still, getting him to the point of unconsciousness was a struggle more often than not.  Getting him to accept that the aforementioned struggle was coming up was almost always its own struggle.

Today, bedtime has gone from something which I almost always dreaded, to something which I usually look forward to, and not necessarily from that oh-God-let-it-just-be-over-for-a-little-while-soon angle, either.   The bedtime routine has evolved, a pre-bedtime-routine-routine was developed and evolved, and now both — while still nitpicky enough — are more flexible than they have ever been.  Maybe 50% of the time, he even initiates the lead-in to his bedtime routine, himself.  This is a child who, at a year old, was driven 20-some hours across the country, and fought to keep himself awake the entire time except for when it was full dark.

On 6/9/11, Ash used scissors at home for the first time, and cut down the plastic on his own ice pop.

A year ago, Ash had almost no self-help skills.  That section of his Disability interview sounded kind of like this:

INTERVIEWER: Can he do this?
ME: No.
INTERVIEWER: Can he do this?
ME: Nope.
INTERVIEWER: How about this?
ME: He actually tries that one, but he’s yet to even begin pulling it off.
INTERVIEWER: Well, what about this?
ME: Hahahaha….oh dear, I’m sorry….no.
INTERVIEWER: This?
ME: Oh, wouldn’t that be nice…!
INTERVIEWER: This?
ME: I’m afraid not.
INTERVIEWER: And this?
ME: That’d be another no.

Today….well ok, most of the answers would be the same.  But he’s a lot CLOSER to being able to perform a number of basic self-help skills independently, or at least with only supervision and verbal cues, with a moderate degree of success (on decent motor planning days, anyway).  For example, the closest he used to come to dressing himself was him sort of making it easier for us to dress him, by, say, holding onto our shoulder as we sat on the floor, and lifting a foot so we could slip it through a pant leg for him.  Well, he still can’t start an open-style zipper (although he can usually move them up and down and can sometimes separate an open-stlye zipper), do snaps or buttons, or tie laces.  He’s only now starting to really get the hang of his velcro sneakers.  But, if things can just pull on and off, he can usually manage it, and about 80% of the time they will even go on in the right direction and need minimal adjustment (I’m thinking of things like the waistbands of underpants, here).

Easter fell on Ash's 6th birthday this year. It would have been tricky trying to give each celebration its due even if Steffan hadn't had to go into work that day, and as it was... Well eniways, we ended up improvising an Easter Egg Hunt in the living room. (He's wearing his birthday shirt, and bunny ears he made in school.)

A year ago, holidays and special occasions like birthdays were still little more than interruptions in Ash’s routine, and for us, some reliable bittersweetness scattered over the calender.  He had started to realize there was something to “get” about these occasions that kept cropping up, but hadn’t really started to “get” them yet.  He’d look forward to seeing extended family once he associated it with hearing that one of these things was happening, but be ready to go back to his usual about half an hour into things.  There was no anticipation for the occasions themselves, and little direct involvement in them.  Celebrating holidays — even celebrating them “our way” — was as yet barely celebrating at all.

Today, while his understanding remains unsophisticated and his experience remains limited, Ash feels there is reason to be excited about holidays like  Valentine’s Day, Easter, the 4th of July, Halloween, Thanksgiving and Christmas.  (It seems that not nearly enough of them made it to the blog, though.)  He’ll talk about them, ask questions about them, enjoy doing crafts and reading books related to them, hope for activities geared towards them.  (The way his eating is improving, maybe next year he’ll even look forward to menus associated with them.)  The mythos of some holidays has begun to enchant him.  He wants to meet Santa, catch sight of Leprechauns, and know if the Easter Bunny is extra soft because it’s magical.  He has ideas about what he wants for his birthday, and what he wants to happen.  He has activities which he looks forward to, associated and anticipated with each season.  In the springtime we can go to the duck pond to feed all the hungry ducks and geese that have flown back.  We’ll pick wildflowers on the way to the playground, and look for butterflies.  We’ll fill the yard with bubbles to catch.  In the summer we can set up the kiddie pool.  We’ll play with the sprinkler, or chase rainbows from the hose.  In the autumn he can “help” us rake the leaves.  We can try to collect one of each color, crunch through them as we walk, and jump in piles of them.  In the winter we’ll be able to go sledding.  We can have a snowball fight, or build a snowman together.

Ash blows out his own candles on the blue-butterfly-adorned, chocolate cupcakes which were "his" at the family birthday party this year. Steffan isn't helping him, though he is gently holding him back from sticking his face too close to the candles.

A year ago, Ash had no social life outside of the family.  He’d occasionally interact with the children of people we were friends with — generally kids significantly younger than him — but never friends he made himself.  Interest he showed in other children randomly met at the playground or library almost never got him anywhere even in the moment, let alone in such a way that there was any follow-up.  We suspected he tends towards adults over other children, at least in good part, because adults are the ones that more often respond to him and find ways to relate to him.  He always had such a social personality, although difficulty expressing and applying it ‘appropriately’.  We knew there was much he could learn from peers, and much, in his own way, that he could offer them.  Try as we might, we just couldn’t provide him with enough opportunities that worked out.  Try as he might, he just didn’t have the skills to make the most….or much of anything….of those opportunities which did.

Today, while not exactly the social butterfly with the brightest wings, and still generally needing adult support to fly with others (help for him with things like figuring out how to participate, and help for those others with things like figuring out what he’s trying to say to them), Ash does have about as much of a social life as contents him.  He is well-liked at school by both NT and Special Needs peers, and has not yet experienced bullying.  Kids in class and on the bus happily try to involve him, include him, and help him, which he finds satisfying even if it doesn’t work, simply because his sense of what a meaningful engagement with someone is, remains rather simple.  He’s been invited to a few birthday parties.  He’s had several play-dates, and can expect more.  He’s even had some rare success at the playgroundHe can tell me about what he has done with people, and not just relate what he saw them doing.

A lot of this, obviously, comes down to school.

Unfortunately, I don't have any photos from Ash's Kindergarten Graduation ceremony, that came out. This was taken at the reception afterward.

A year ago, we didn’t know if Ash would be able to handle school, or if school would be able to handle him.  For starters, he had never been in any kind of program outside of home, and had also never really been away from me for any substantial quantity of time.  Hell, he’d been babysat three times in his five years.  The half-day, 2-month, special-needs, pre-K program which he entered into last summer, was an extremely loaded experiment.  It wasn’t quite less of one when he started a full-day, integrated Kindergarten program in the fall.

Today, he is a Kindergarten “graduate” after his first try.  He is, by our request, in summer school — a full-day, 6-week, integrated program.  Next September, he’ll begin the 1st grade.  Do we know how it will go?  Of course not!  We’re judging the best mode for his education (homeschooling, or what manner of in-school program), as each year moves along.  Thus far, however, the program which he is in, has been an excellent match for him.  I might even dare to suggest that he has thrived.  Oh, his challenges and delays are still significant, but some of the more drastic gaps have also narrowed significantly.  The angle of his developmental curve….the track which, blessedly, he has at least always followed….has changed.  Peer modeling and adaptive equipment — two tools we did not previously have, for working with him — have proved invaluable.  We’ve always found that by the time we need to give his last evaluation or profile to someone new, it aught to be updated.  Now, however, people don’t need to have all the details charted out for them on paper, to mark his progress.  Friends remark, from one month to the next, on how much better his communication is, how obviously impressive his self-control is becoming, and on how it’s getting hard to keep up with the things he is learning to do.

This is the difference ONE YEAR can make, people.  We’ve got a long way to go, sure, but look how far we’ve come!  The future is a lot of things besides daunting.

Doctors…can’t always live without ‘em, so often want to kill ‘em

Poor Ash.  Every time he got around 70-80% better, he got worse again.  He went from thinking he’d have a birthday party to thinking he’d have play-dates and activities to spending his entire Spring/Easter/Birthday break having copious amounts of green-yellow snot purged from his nose.  Just last night it turned into a bigger thing again, with the congestion & runny nose remaining, the cough getting worse again, and the “sick tummy” and fever coming back.  Mmyeah, we’re not really having much luck with birthdays this year.

Before I could even call the Dr.’s office to make an appointment for him (which I wasn’t able to arrange for until Wed. afternoon, most of the way through the school day….assuming he can go to school — and all things considered, it’ll end up a combo visit, part 6yr annual-appointment, and part, “Hey, my kid can’t seem to stop being sick.”)….before I could even call them, they called me.  It was in relation to one of our THREE PENDING REFERRALS.

See, early last month we went back there just to follow up on them.  Two were for me.  One is a referral for the Pain Clinic that’s been pending for a good year and a half now, since the last of the Ortho specialists gave up, and the Rheumatology doctor who happened to be his Fellow that day gave me an on-the-spot Rheum consult for Fibromyalgia, hoping to, “Save me time.”  No one can seem to decide if they have enough records, or have remembered to share enough records, to validate my need for this referral.  After over 20 years of fighting this fight, and now it probably being too late (based on time frames within which you’re supposed to have earned a certain amount) to even try re-re-applying for Disability, I am….less than amused.  The other one for me involves the fact that at my last gyno check, I had finally convinced my latest Dr. (she being a breast cancer survivor herself) to refer me for an annual mammogram, since when you have enough family history (both grandmothers, at least one or two aunts, and a scare with my mother, last I knew) those are supposed to start at 30, not 40.  She felt around until she felt potential lumps, and sent me right over for a mammogram.  That turned into a mammogram and three rounds of sonogram.  Masses were found on both sides, and while they were tentatively judged to be benign (potentially scar tissue from removed moles that had mutated), they wanted me to go back for a short-term re-imaging, just to be safe.  Yep, the second of the for-me referrals I’m still trying to get them to follow up on, is the appointment THEY have to make FOR me, for the re-imaging.  I’m now two months late for it.

The third referral is for Ash, and it’s been pending since late Autumn, I think.  The state Dx-ing eval center recommended a referral for a pediatric neurologist, after they decided that they didn’t think Ash had mild Cerebral Palsy after all, but definitely had some sort of neuro-muscular disorder in addition to his purely neuro issues, they just weren’t sure what.  Now, we’ve given copies of their report to the Dr.’s office twice, ourselves, in addition to the fact that they were supposed to have received it directly from the center.  Well today the Dr’s office called to tell me that they still don’t have the records they need to put the referral through.  I know they’ve been converting things to an electronic records system….did they lose the paper copy of the report from the eval center AGAIN, while they decided which version of his file to add it to immediately?  “That’s the thing, we don’t have a file for him.  We don’t have ANY records.  You can’t expect us to refer him for something when we don’t have any information on why it would be necessary.”  Um…excuu-the-f*ck-use me?!  They should have a paper file for him a good two inches thick at least, containing everything from his premature birth through that appointment last month.  We have our own copy that goes up through him being just shy of three years old, when we made the big move, and we have our own copy of the various school and state/medical evaluations he’s had since then, although THEY are the only ones with all the record details from the normal medical stuff from the past 3 years here, with the exception of vaccination records shared with Ash’s school.  Now, that doesn’t leave a lot of missing information…just the formal notes on height/weight at well-child visits, really.  But that whole file?  That’s a monster to make another copy of, and we’ve already been through that.  And they have managed to LOSE this entire file?  And they are going to give me attitude about how it’s MY fault that they are long overdue on putting a referral through, because I neglected to be aware that they had done so….oh, sorry, I mean that I must have forgotten that they never actually HAD this file.  That they were still adding to.  Last month.

Good times, baby.  Good times.

 

Random Tip Tuesday: Get an extra writing and reading skill out of your magnetic letters

Ash, on 1/19/10, uses his plastic letters to spell out "ME" -- then hams it up for the camera to make sure I noticed.

Magnetic letters are just one of those things that most kids end up with.  Like magnetic poetry for preschoolers, they end up all over the fridge — or panel of door/wall strategically painted with magnetic paint, if your kitchen can’t be made into a safe enough area for your kiddo, no matter what you do — usually just holding up papers in a nonsense jumble, but occasionally revealing some flash of passing insight.  Before the fact that they are magnets starts taking over the fact that they are magnetic letters, the high aspiration for them tends to be that they will help the child with developing spelling skills.  Take them for all they are worth, though, and those take-’em-for-granted backdrops of childhood actually offer a wealth of different exercises for reading and writing skills in addition to those related to spelling.

Ash has the typical variety of magnetic letters, a gifted set in wood and an inherited set in plastic, each including uppercase and lowercase letters.  He also has two combined sets of uppercase-only magnetic letters which long survived the LeapFrog toys they came with.  (I’m a big fan of the LeapFrog Fridge Phonics Magnetic Letter Set and the next-step-in-skills Word Whammer — although I wish the assorted LeapFrog phonics-related toys and videos accounted for both primary and secondary letter sounds — but the electronics were not durable enough to last long through the abuse that Ash, as a toddler with Sensory Processing Disorder, put them through.) You might think that the LeapFrog letters were redundant at that point, especially with their disadvantage of only coming in a single case, but they actually served a very useful purpose.  Although Ash knew how letters are supposed to be oriented when he’s reading them, the plastic bases of the LeapFrog letters helped to reinforce for him that there are rules about the angles which letters need to be placed at, in relation to each other, when you are putting them together yourself.  In fact, I recommend getting crafty with the average uppercase-and-lowercase variety of letters and gluing them onto bases (of sheet magnet if you want to maintain that aspect, or just cardboard if it doesn’t matter), for this reason.  Create a stencil for yourself of a half-circle with flattened sides, sized to fit the average lowercase letter in your set, and use that to cut out enough bases for all the letters, as well as some for added-on punctuation and some to be “blanks”, if you have enough letters to use them as tools for sentence and not just word construction.  Glue the letters so that they are centered onto the width of the bases, but so that uppercase letters and lowercase letters with “necks” extend a certain distance above the base, and lowercase letters with “tails” extend a certain distance below the base.  If the letters are fit together so that the bottoms and sides of the bases are aligned, the letters will be too.  This provides some nice visual reinforcement to preemptively support handwriting skills.

When it comes to how to use the letters, we also got a little creative.  In truth, Ash came up with most of these activities himself, but that comes from him having an excellent intuitive grasp of how elements of language (sign, speech, spelling, reading, writing) function, despite him having a lot of difficulty with language processing and how each of those elements — especially speech — can be effectively applied.  Certainly, however, you could work on each of these exercises with your child, even if they weren’t originally the child’s idea!

Ash and I would make words together with plastic letters. (He preferred doing this on the floor, where his space was more unlimited.) Sometimes he’d think of a word, and either assemble it from memorized spelling or try to work it out — occasionally with clues from Mommy, but usually on his own.  Sometimes he’d have me think of a word for him to try to assemble.  Sometimes he’d have me assemble a word, and then he’d try to read it, sounding it out whether or not it was one he could sight read.   Sometimes he’d put together random letters, and have me read to him what it would sound like.  This was treated as a bit of a game, in which I’d sound out the string of letters and then, with a silly voice and face, say, “Noooooooooooo….that’s not a real word!” Then, perhaps, I’d shift a few things around, to turn it into one.

In this last-mentioned particular activity, Ash was attempting to be sneaky, trying to learn something without letting me know he was actively trying to learn it.  See, he’s memorization boy.  (We’ve discovered over the past year, as his communication skills have improved enough to allow us to, that he has an eidetic memory, even if his processing issues prevent consistent, useful, appropriate application of it.  Notice a theme, here?) He had for a long time known single-letter phonetics, because he memorized them from a LeapFrog “Letter Factory” video, from the first of his LeapFrog phonetics toys, from learning-play interactions with me, etc.  He could also sight read a ton of words, because as long as his audio and visual processing is working at the time, all it takes is looking at a word while hearing it read to him once, and he’s likely memorized it.  The thing is, as soon as I began working on full-word phonetics with Ash, he realized that there were holes in what his memory could provide, at any given point in time, and he wanted to figure out how to fill them on his own.  He realized that the single-letter phonetics he knew didn’t always match up with what he heard when I read him something, and with this clue as to where the answers lay…

One of the tricks to teaching a child with Ash’s disabilities — Autism very much included –  is to let them feel like they are in control of not just the lesson, but the choice of lesson. You trick them into thinking they are tricking you, and learning something on the sly.

Ash hadn’t been able to simply memorize things like the lesser-used, secondary “sounds” of some letters, or letter-combination sounds like “ch” and “th”, etc., because those weren’t in the video or dealt with by the toy.  Even if I made visual props of the letters/letter combinations and provided the sounds along with them, in a personal lesson….he couldn’t learn as well from that as from a video, because lesson from PEOPLE have more sensory distractions to them.  (This isn’t to say he never learned from me or anyone else, it’s just not what came easiest to him, because there are more ways for his disorders to interfere.) In any event, while he hadn’t been able to memorize them in an isolated fashion, they were of course elements of entire words he’s memorized.   When Ash created the nonsense-word activity, he was, in a way, trying to use his growing skills with reading things phonetically, to work backwards towards memorization.  He was trying to learn all those little rules in the way he KNEW is his strength.  He knew those weren’t real words.  What he was doing was testing to see how I sounded out certain letter combinations he’d put in the nonsense words.  He’d use his growing grasp of phonetics to figure out which part of the “word” I was sounding out, and he’d be waiting for me to get to a certain part.  As he focused on a particular letter combination and the sound I was making, he’d try to memorize the pattern.  In addition to the letter combinations that were already suspect as things he needed to finish figuring out, he was checking for any others he’d missed.

For the record, when Ash entered Kindergarten he was tested as already being able to read at the end-of-2nd-grade level.  Sometimes thinking outside the box gives you a lot more room to learn.

Picking favorites and having a reason

Ash: Dragon Tales is a lot of fun, isn’t it?

Me: I think so too!  Who is your favorite character on Dragon Tales?

Ash: Um, my favorite character is Ord.

Me: Oh yeah?  Why is he your favorite?  What do you like about him?

Ash: His color is blue, and he’s a dragon.

For Ash, something being a blue dragon is a very good reason for it to become a favorite.  Of somewhat more surprise is that we had this exchange, this morning (after I confirmed that, yes, he would be able to watch a Dragon Tales video after he got home from school).  I mean, to start off with, it’s a 5-part conversational exchange, and not a pre-scripted one.  It all starts with him sharing his interest and pleasure — ok, so that is something I see him doing constantly, but it tends to elude evaluators and teachers for some time, so it still falls into the HA!  My son CAN be capable of this! category, for me.  Ash was able to smoothly answer questions.  In doing so, he expressed a preference, as well as a reason for that preference.

That’s pretty darn good, if you ask me.  It was certainly more fun than the way yesterday morning went!

Q/A: How was your son diagnosed with Autism (Part 2)

In Part 1 of this feature, Cat from West Virginia asked:

“How was your son diagnosed with Autism?”

Please read Part 1 before continuing here.

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It took about two years (which, no, isn’t typical) of untangling knots in bureaucratic tape so we could shake out all the hoops to jump through, before we reached the next official stop on the road to our son’s Autism diagnosis.  In that time we had refused to settle and take for granted, and we had continued our research into and attempts to help our son in relation to the Autism that we believed was another piece of his puzzle.  Everything that we experienced with him persuaded us that we were on the right track, so we just kept moving forward as best we could on our own, until we were able to get the help we needed to take Ash further.

The aforementioned help first took the form of a developmental evaluation through our school system, when Ash was a little past his 5th birthday.  Although not an officially diagnostic evaluation, it unofficially was a shorter, less comprehensive version of the same thing.  The school system only has the authority to evaluate developmental standing in and of itself, and only insofar as they believe that it relates to schooling.  At the same time, because it will affect a student’s IEP, the school system’s evaluators will recommend a formal diagnostic evaluation for this or that, on the basis of having tested for and drawn conclusions about said this or that, anyway.  So it was that Ash ended up with a placement in a special-needs, pre-K, Summer program, boxed up by a large sheaf of paper judging him – unofficially, of course *cough* — to have both Sensory Processing Disorder across the board, and a definite case of Autism Spectrum Disorder as well.  The center which evaluated him more specifically judged him to have ASD-LF (close to the lowest-functioning end of “The Spectrum”), with special mention a rather low IQ.  While we had come to them saying we believed our son to be autistic – a term they still somehow feared to use in our presence – we felt that his “scoring” had been severely affected by his inability to process in the testing environment, rendering the tests indicative of not much besides confirmation of what to test further, and a sense of the challenges presented in testing him.  That is important, but not conclusive or comprehensive information.

Ash’s teacher in the summer program quickly agreed with us that his evaluation through the school system had underestimated both his intelligence and his capacity to function.  Somewhat unfortunately, her view, we felt, was overly confident.  She had only seen him for a few hours a day, for about two months, and in his best season for self-control, energy, focus and developmental progress.  As such, there were many aspects and manifestations of his disability that she never had a chance to witness.  She believed him to be extremely bright, and ASD-HF.  While we believe he has the capacity to one day – with enough support and therapy – become that high-functioning, we feel that currently, Ash is more accurately middling-functional, and best classified as having PDD-NOS.

Currently, Ash is enrolled in an excellent integrated Kindergarten program, with the staff’s feelings and plans, more so than his IEP does so far, reflecting agreement with us.  His actual classification within the special education system, however, can not change to match his perceived diagnosis until he has the diagnosis more formally.  That, along with his other anticipated diagnoses, is waiting on his full-day, comprehensive, diagnostic developmental evaluation through the state….an appointment we have been waiting almost two years for, and which we might finally be within a few weeks of.  Once we have that, Ash’s diagnosis of Autism will be, even if it might eventually change in sub-classification, irrefutable.  While labels are double-edged swords, Ash needs what the label will bring him now, to be able to reach the point where he can have a chance of outgrowing the use of it.  With a formal diagnosis, we can maximize our access to the resources of the school system, we can apply for SSDI for him, and we can tap into countless other Dx-dependent resources for aid, services, tools, networking, and experiences.

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Visit your state Department of Special Education and contact the Regional Office closest to you, to seek the most relevant information about how to proceed with getting evaluations and services for children with special needs older than three years old.

 

Q/A: How was your son diagnosed with Autism (Part 1)

Cat from West Virginia asks:

“How was your son diagnosed with Autism?”


Our son’s diagnosis of Autism Spectrum Disorder is sort of an….ongoing process, actually.  In fact, because classification within ASD can change as a person with the condition ages and develops, it is possible that our son’s diagnosis of Autism will remain an ongoing process for much of the rest of his life.  Nevertheless, the “how” of his diagnosis began when he was around two years old.

Since he was born into medical scrutiny, no one was surprised when Ash’s developmental progress danced around any number of red flags, and no one tried to tell us we were simply being paranoid parents when we posed to the Developmental Specialist of the family practice we used, at around the time he was one, that perhaps we needed to bring Early Intervention onto his case.  At first – and he was a year and a half old before the paperwork got us that far, so don’t put off starting this process, because it can take what feels like forever! – they simply evaluated his developmental delays as stand-alone issues.  We noticed many patterns around and between the delays and challenges, but didn’t have a name for them until a few months later when the daughter of some friends of ours was diagnosed with a then-largely-unheard-of condition called Sensory Processing Disorder.  A few minutes into days and days of research, everything already seemed to make sense.  (Bringing this up with his team from Early Intervention left us somewhat baffled, but that is another story.)

By the time Ash was two, however, it was clear to us that SPD did not explain everything.  There were elements to how he functioned which were not sensory in basis (although they interacted and overlapped with sensory issues), and yet proved, by their failure to respond to certain kinds of structured response and discipline, to not be behavioral issues of a typical nature either.  We knew enough by that time about Autism to feel that it filled in the blanks, but the ‘professionals’ preferred not having any answers to investigating answers they did not expect.  For most of a year we sought a venue towards an Autism-specific evaluation, firm in our belief that if one was done by a specialist in that disability, they would find some explanations for us; we found all our not-privately-funded pathways blocked by statements like, “But he makes eye contact, he CAN’T be autistic!”  When Ash was turning three and aging out of the Early Intervention program, they finally sent us on our way with the post-script of, essentially, “Well, he’s way too young to even think about it.  Keep focusing on therapy for the elements we’re sure of.”

Go on to PART TWO to keep reading…

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Please don’t get me wrong – despite our wishes that Early Intervention had also done a few things they did not, what the program did do for us and our son was extremely valuable.

Please visit the website for your state’s Department of Health to find their page on Early Intervention Services and learn more about and/or begin the process of getting E.I. services for your child.  Or, go directly to their directory of Municipal/County Contacts to get in touch with a local representative.

Navigating some tricky territory in autism diagnosis: Part 1½

 

A little while ago I published “Navigating some tricky territory in autism diagnosis: Part 1″, which dealt with the challenge of getting someone diagnosed when they do not manifest the symptoms of a disorder in the most common, predictable ways.  Before moving on to the other intended parts of that feature, I thought it would be worthwhile to share some of the feedback and stories I got, which exemplify the diagnostic troubles of those who are not typical atypicals.

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Leigh Edwards says:

Well done! To add ingredients to the mix, did you know that Aspergers has primarily been studied in males- to the extent where data from known Aspie females has been discarded so as not to confuse the mix? This is just one of the reasons it has been so hard to get a diagnosis for my middle kiddo.

Females are “atypical” aspies in general- because female nature is so in tune to social interaction, females “hide” the symptoms far better than boys, and are less likely to become aggressive. My daughter will look you in the eye, sure! But it’s kind of like looking into the eye of a shark at times. She is better at mimicking her peers than the average male aspie, yet does not seem to understand WHY her peers behave as they do. She has no inherent concept of personal boundaries/space, prefers things to be lined up neatly, and can only mimic empathy for people or animals… when she wants to. Her communications skills are delayed, and yet she somehow manages to stay on the honor roll. *sigh*

Thank you, Leigh! That is, thank you both for the compliment, and for the rest of your comment. I think you’ve nicely illustrated the “shadow on the wall” problem.

 

Ali O’Brien says:

Thank you for writing this, Rhiannon. As a special educator and math teacher with a great deal of experience with students from ages 7-24 and with moderate-to-high functioning ASD, I have to say that too many teachers are very black-and-white about disorders because we have so little time in the 36 credit hours to devote to learning about each special need. Especially in the larger, integrated classes, when a kid doesn’t fit a preconception, the student can fall through the cracks. Or, worse, be labelled with an inexpert diagnosis from a teacher who’s taught a kid or three with this or that diagnosis.

A parent who educates him/herself and makes sure their child gets the diagnosis and a resulting theraputic plan that you continue to look over to ensure a proper fit is so very, very important. ASD is the swimsuit of disorders – it’s painfully uncomfortable trying to find the right fit and what was right last year might not fit anymore, if you’ll excuse the metaphor.

Thank you again Ali, for that educator’s perspective! I actually really like the swimsuit metaphor, all the more so because it leads in to the upcoming article-segment about the TIMING of diagnostic evaluation.

 

Rachela says:

Great article. Typical autism is rare to come by, it seems. I don’t fit the profile of classic autism or Asperger’s, neither does my little brother. Our father fits the profile of Asperger’s, somewhat. On the eye contact issue, he neither seeks or avoids it, they say. Eye contact is nothing that I notice, not about myself or others.

I’m pretty social, for an autistic. Not only do I interact with others online, I try and interact with others offline, mostly by playing things like sensory games, of a sort. My verbal ability varies day to day, from completely nonverbal some days to carrying on a small conversation on my best days. Most days I can answer questions. SPD also complicates my ASD. Even with everything, I’m still mainstreamed in school and take advanced classes, and can communicate through writing.

So, I guess I’m trying to say, nice look at the atypicality of some cases of autism.

Thanks for your comment. :-) It’s interesting to hear about/from an entire family of “atypical” (which as you say, seems to be awfully common) autists — and also wonderful to hear about how well you, personally, are able to do in school and in life.

 

Eric says:

I think you described an important issue about the use and misuse of diagnoses (dx). Unlike a specific disorder or illness, autism manifests in a spectrum. It is not well defined. That means establishing a dx is not 100% objective. Then, as you said, autistic conditions can manifest in different ways.

My son is high functioning. He has typical and less typical traits. My son, too, likes to interact & laugh with people. He loves having their attention. It is his personality. But at the same time, he has trouble adapting to other people. He lacks empathy. He misses emotional cues and doesn’t pick on people’s intentions. So often, he plays too rough, or doesn’t know he should stop doing what he is doing, because the other person has clearly expressed a disagreement. When people see him, they often doubt his dx, because he “should” be inhibited, if he were truly on the spectrum (sigh).

Thanks as ever, Eric.  My son, like yours, has a social personality — yet is impaired when it comes to his social function. One of the interesting things about Ash is that to some degree he CAN pick up on even some fairly subtle vibes from other people, in relation to how they are reacting to him, and yet he still doesn’t always able to respond in what would be considered an appropriate way.  That is, in general, if a person is interested in him in a positive way, he’s delighted, and lives it up (unless he’s in over-stimulation withdrawal mode).  If a person is ambivalent towards him, he’s usually ambivalent towards them.  If a person is studiously disinterested in or doesn’t seem to approve, he takes it as a challenge to win them over, generally by upping the ante on the same behavior they were disinterested in or didn’t seem to care for in the first place.

 

Heather E. Sedlock says:

My youngest son is diagnosed PDD-NOS because the PTB (powers that be) at the Childrens Hospital in Boston thought he was “too social” to fit into the ASD category. They failed to take note that he had already been in early intervention services PROMOTING pro-social behavior for 2 years by that point.

GREAT article :)

Oh Heather, I’m sorry, but your comment made me laugh (in a headsmacky sort of way). I shared it with Steffan, and he had the same reaction. That’s just…just…yeah. 

 

Candi S. says:

Right on! As I say in my “red flags” article on autism identifiers, any atypical eye contact is a red flag: there are some people who WILL make eye contact, but it is too close, too long, or in other ways different from what is socially acceptable. My daughter who in on the spectrum looks at people, but never looks at their faces, so she has a hard time identifying people sometimes because their hair is similar to another friend she knows. She also leaves noses off the people she draws. When I question her about it she says “no, that’s right.” :) My son who is more “typically” autistic with a speech delay is atypically autistic in that he has a very laid back personality and is fairly easygoing and tolerant of others. Looking at the bigger picture, my husband is an aspie who has learned to read an communicate effectively in our marriage, sometimes just by saying “I don’t know how to say this the right way.” I wish everyone could understand how wonderful people on the spectrum are. 

 

First off, I would be happy to cross-link with your article, if you’re interested. :-)  

Ash’s facial recognition seems to turn on and off like so many of his sensory-related issues.  Sometimes he can identify people in person or in photos, even after not seeing them for years, or if they are of a different age than he is familiar with seeing them at.  Other times basic similarities (gender, race, weight range) and the expectation of seeing someone is enough to mistake others for them.  This goes for people he is close to and sees regularly, as well as acquaintances.  There were one or two periods when Ash couldn’t tell the difference between one of his uncles, and two vaguely-similar-looking close family friends.

 

Melissa Reid says: 

 

I am unable to find parts 2&3..are they out there, and if so, how can I locate?…I have known since my (now 14yr old) daughter was a toddler that she is high fx autistic-but NO ONE (except her OT after 2-3months of 3xweek working with her) will even test her or consider it. Although ADHD was so apparent since BIRTH (even a blind man could see), & the sensory-integration function d.o diagnosis helped Immensely…There is still that missing “hole” in the puzzle- that needs to be “documented”, so I can get her the help she needs. Problem is- she compensates by literally “hiding” some of the sensory/& cognitive “deficits” she would encounter frequently; so they are extremely hard to diagnose once her brain has done so!..But they are still there!!-it’s like her brain creates a neural pathway “bridge” over the problem- like covering it up.(!?!)- but never fixes the problem, so she’s left to forever be lost EVERY TIME she encounters it again. I hope this made sense-it’s difficult to describe. Thank You. 

 

Thank YOU.  This made perfect sense to me, anyway, and I’m very glad you left that insight in your comment, because it’s a challenge in diagnosis that I might not have covered. (There are so many, after all, it’s hard to get to every last one while dealing with my own ASD child!) As for the others parts of this article, they aren’t hiding from you, they are just forthcoming — I’ve yet to have the opportunity to write them coherently. If you subscribe, you will receive e-mail notification every time I publish a new article — including those. I hope this series of articles proves able to help you help your child get the help THEY need.

 

must_sew_faster says:

My daughter was denied a diagnosis on the spectrum because her area of fascination is other people, primarily what they are doing at any given time. =P

So because she’ll point at another little girl and ask an adult, “What is she doing? Where is her mom? Why is she wearing a skirt?” that makes her social, I guess.  So she has ‘receptive and expressive language delays’, ‘developmental coordination disability’ and ‘pervasive developmental delays’ as her Dx.

Thank you for offering such a poignant example of one of the seeming paradoxes possible within Autism.  Here we face yet again the trouble of the stereotype that all autists are completely anti-social, that they are not only uncomfortable with, but disinterested in anything that has to do with other people, or with interpersonal interaction.  This little girl, like most autists, has an area of fascination, a passionate interest that stands out from all others — and for her, it’s other people.  But, as her mother describes, this fascination is….information-based, and detached.  She isn’t asking her mom why the girl might be doing what she’s doing, expressing a desire to do it with her, talking about how the girl must wish her own mom was there to see her, or pointing out that the girl looks uncomfortable in her skirt.  She is after information about the situation, more than understanding of motivation.  There remains a missing link for her, in terms of the ability or desire to relate to the other girl.  When you look at the details of the behavior, it still fits the pattern of Autism pretty easily, but to someone who assumes that autists really could care less if anyone existed but themselves, it looks like she’s too SOCIAL to be Autistic.

FraggleFemme says:

Interesting article. It is sadly, too true. We went through battle upon battle getting my son diagnosed on the spectrum because he spoke and made eye contact on occasion.  It wasn’t until we got him assessed by someone who really really had an in-depth training and understanding of what Autism is that we got the diagnosis we already knew was true.  In fact, the doctor who performed his official diagnosis testing video taped part of the testing with our permission.  He wanted it to use in training sessions with his peers and other doctors to show others how a high functioning autistic kid looked and acted, because so many high functioning kids are overlooked or mis-diagnosed.  Unless they can’t talk, don’t make eye contact ever and walk on their toes, they can’t be autistic to some.  It’s a spectrum, people!  They’re not all RainMan :P

Thank you — I can relate.  Ash’s diagnoses have all come after I requested confirmation, not clues, from evaluators.  It’s comforting to hear, I think, about what that doctor did.  Too many people nod their head at what Autism SPECTRUM Disorder entails, but completely fail to think about what it means.  That is, they talk about what defines a spectrum disorder; they’ll talk about how there are a wide range of symptomatic elements and degrees of severity, which leads to a whole lot of people with the same Dx, who won’t seem to have much in common unless you look more closely and have a decent idea what you’re looking for.  And yet, at the same time, there are too many diagnosticians who turn from the reality of their potential patients to look at a sort of theoretical cookie-cutter assembly line, waiting to see if the person will come gliding towards them down the belt, in a puzzle-piece shape perfectly identical to the model.

To be fair, I find some of this same hypocrisy within the Autism community, which only exacerbates the problem.  There are autists who are one minute shouting, “It’s a SPECTRUM!  You can’t say that some autists don’t count, just because we’re not exactly what you think an autist should be like!” ….and the next minute shouting, “I am like this!” or “I cannot do that….because I am autistic!” — which, when detached from its context, gives the stray person hearing/reading it the impression that what they are claiming for themselves is an Autism-standard.  Wording must be careful when educating.  It would be more helpful in breaking down the confusing mythology of Autism to say something along the lines of, “My being like this — or having trouble doing that — is a result of the such-and-such I have because of my Autism.” You know what?  Let’s exemplify further.  Let’s say a given autist has applied for a job in data entry.  They’ve been called in for an in-person interview, but that’s a problem for them because they cannot track the verbal conversation in what’s considered an appropriate fashion.  If they say, “I am sorry; would it be possible to conduct the interview over real-time type?  I have a language processing disorder as a facet of my particular version of Autism, and that makes it very difficult to converse verbally when under pressure of time.  If you give me the chance, I’m sure I can prove my competence for the job both through, and with, technology.” – well, then that gives the impression that a request for reasonable accommodation under ADA laws is being made, as well as that, while the effect of difficulty processing verbal conversation is caused by Autism, it is not something which can be taken for granted about all autists.  If that same person responded to the interview arrangements with, “I can’t understand you, I’m autistic!” however, it would not convey information helpful to anyone.  While this example comes from the adult context, it could easily enough be altered to reflect, say, a child in school being given what would have been an oral exam.  I went with the adult example because it is adults who are (usually) in the position to do the most educating, and the most advocating.

netiimvzaviyos says:

Another great article.  It reminds me of the essay I put together when I started the process of getting CJ evaluated — there were certain things I stressed because I knew they were listed as diagnostic criteria is the DSM-IV.  I was pretty sure what was going on, and I wanted to make sure the evaluators did too, because on an easy day (I don’t like to say “good” days or “bad” days — it’s my way of redirecting my thoughts), CJ’s behavior does not deviate too much from the norm.  (Seriously, I’ve had people say things like, “Are you sure about this?”  Yeah, as if I’d make it up.  Come take care of him for a week and then argue with me.)

Thanks…  It’s a tricky thing, I know.  On the one hand, you don’t want to present a biased view of the symptoms to the people who are, after all, the professionals in the position to diagnose.  On the other hand, the attentive and well-researched parent sometimes is in a better position to diagnose, if a less official one, than the doctors are in.  I draw my lines based on the notion that as long as you’re completely honest about everything, the effort you put into directing attention to certain elements over others, is reasonable.  After all, no evaluator is going to see everything your child has to offer, in any given period of time — or even several — set aside for evaluations.  Since they can’t accurately judge based just on what’s in front of them, it’s up to you to provide as accurate and thorough a view of what goes on behind their scenes, as possible.

Personally, I recommend borrowing some kind of digital video device, if you don’t own one, to make use of for however long you can, before a crucial diagnostic evaluation of your child.  While you can’t expect doctors to sit watching hours of home movies, video clips that exemplify concerns of yours not certain to be evinced during evaluation can serve as valuable evidence to add to your child’s case.  Such clips allow, in a way, you to tell the doctors what they need to think about, without coming across to them as you trying to tell them what to think.  Obviously, there are going to be some things that, by nature of the fact that they are going on, you’re not going to be in the position to video.  (Those full-out meltdowns that require physical restraint, come to mind.)  Many other times, recording is going to be counter-intuitive.  Instinct says to memorialize the moments when our child is laughing and playing with his cousins, not sitting in the middle of a pile of books, rocking back and forth and staring into space….to capture the smiles, not the hysterical crying over nothing that can be rationally identified….etc.  But really, you might have to.  Those evaluators are not going to live with you and take care of your child for a week, but you have to help them believe what you’re telling them about how it might go, if they did.  This is especially important if your child’s “default mode” involves them coming across as happy, obviously bright, and generally well-behaved, all of which, like it or not, defy Autism stereotypes.  There are a LOT of things that can upset an autistic child’s default mode.

Your points about SPD and opposite manifestations were also on the spot.  One frustrating thing I’ve found is that even people who know a little bit about the disorder tend to think of it in terms of being sensory-avoidant, so when I talk about CJ’s sensory-seeking behaviors (and boy, does he have a lot of them), they are tempted to write it off as, “He’s just a boy with too much energy,” etc.

That right there is one of the common reasons that Autism’s often-comorbid condition of ADHD is sometimes the only thing that gets diagnosed.  I will, however, get into that sort of thing in another part of this feature.

And about the social component of the diagnosis — it still irks me that lack of compassion/empathy is seen as a hallmark for Asperger’s and other ASDs.  Of course, I’m motivated by the fact that my son seems very attuned to what other people are feeling — heck, his first sentence was, “No cry,” spoken to his sister because he was concerned when she got upset during a diaper change.  But I’m also basing my POV on statements made by people on the spectrum — people who say that they are exquisitely aware of others’ emotions, to the degree that they shut down or act out when things get intense because it is just too overwhelming.  (And I wonder how much the emotional awareness just doesn’t get manifested openly because the person in question is too distracted by other sensory input — as in, “Whoa, too much eye contact” — to focus actions in the directions of, “Wow, that must have upset you.”)

It’s true that for some autists — usually on the Asperger’s end of the spectrum, but by no means all of them either — that hallmark is a reality.  It is also true, however, that such a truth does not hold, by any means, for all people with Autism Spectrum Disorder.  It should also be noted that impairment of compassion and/or empathy, to any varietous degree or manifesting/applying in any variety of contexts and perhaps not others, does not mean that that the Autist is going to display the thought processes or behaviors of someone with the neuro-psychological condition of Psychopathy or of Sociopathy.  (I have learned about one pediatric sociopath who was misdiagnosed as autistic as a result of a sort of backwards version of this painfully inaccurate stereotyping.)

 

 

Navigating some tricky territory in autism diagnosis: Part 1

Shadows can be misleading. An accurate evaluation must do more than just guess based on the shapes cast on the proverbial diagnostic wall.

If your child is being evaluated for a diagnosis of Autism Spectrum Disorder (ASD), you need to be very careful in making sure that the specialists are judging the specifics and details of your child’s case, and not just the ease with which they can guess things about him.  Of course, the same is true for any diagnosis, but what follows are some of the common ways in which an evaluation can go astray from an accurate diagnosis of this disorder.

1.  You child is not the typical atypical…

Neurological disabilities in general, of which Autism Spectrum Disorder is definitely one, have the trademark of inconsistency.  (Moreover, most of those with ASD will also have some degree of Sensory Processing Dysfunction combining and collaborating with the Autism, and SPD, even among neuro-disorders, is known for being particularly inconsistent.) And yet, there remains an expectation that all people with the same neurological disorder, are going to display the symptoms in a consistent-between-them fashion.  It doesn’t seem very logical — or reliable — when you think about it that way, does it?  Of course, a certain amount of profiling is necessary before you can go around fitting people under headers, or we might as well say things like, “She has [insert that person's name here] Disorder.” Still, there’s a difference between categorizing people under headers, and trying to fit them into boxes, not to mention letting them slip between the cracks if they don’t fit neatly enough.  Categories are useful as clues and guides, but can sometimes prove counter-productive when treated too strictly as rules.  The truth — and the best you can do for people — often lies somewhere between the structure of science, and the potential chaos that comes with the infinite varieties of human nature.

It seems this kind of thing becomes a particularly likely problem in diagnosis, when the person being evaluated exhibits one or more classic symptoms of a given disorder, but in the opposite way that most of those recognized as having the disorder, do so.  Imagine if you will an image created by superimposing a grid on a grey field.  To each space created is assigned a characteristic of human ability and behavior, and if a person is atypical in that respect, the color of that space is changed, perhaps to the degree of the deviation from the accepted norm.  Once the grid is complete, a pattern will have emerged, and it is those common patterns — not always exact replicas, but recognizably similar — which lump people as having one disorder or another.  (See, even more so than is the case with disorders of the body, disorders of the brain rarely add something completely new to the human experience.  Thus do hypochondriacs have easy fodder — almost everyone would be able to relate to some elements of most disorders, if they learned about them.  What ‘qualifies’ someone as having a given condition is the number and severity of their symptoms, and how they affect whatever is considered to be a standard quality of life.) Ahhh, but let’s think back to our grid.  If someone is atypical in the more common, familiar, predictable way, then the color of that spot is changed to(wards) black.  It is these patterns of black-on-grey that most diagnostic specialists have in mind, when they evaluate someone.  But what if someone is atypical in the opposite way from what’s ‘normal’ for that atypicality?  Change the color of that spot to(wards) white.  What emerges at the end is the same pattern, in terms of what’s typical and what’s not, and yet it LOOKS different.

Obviously, not all symptoms of all disorders are legitimately ‘reversible’.  Some symptoms, you might say, inherently go in one direction.  (These are the ones that are more about a very specific behavior, than about how a kind or category of behavior is atypical.) You’re not going to find someone with Obsessive-Compulsive Disorder (OCD), who is careless and carefree about how they interact with their environment.  You’re not going to find someone with Manic Depressive / Bipolar Disorder, who naturally has the most mellow, even-keeled, middle-ground, utterly boring moods.  But you can find people with Seasonal Affective Disorder (SAD) who ‘come to life’ in the Autumn and Winter, instead of feeling their health, energy, happiness and focus drain away with the sunlight.  And, to give a more personal example, you can find autists who are ‘social people’.

The typical-atypicality ‘look’ of the social patterns of Autism seems to be, interestingly enough, based almost entirely on the Asperger’s profile, with Asperger’s being at what is considered the highest-functioning end of the spectrum, where social processing is sometimes almost all of what’s impaired (if no other disorders are also coming into play).  A stereotypical ‘Aspie’ will have trouble reading vocal tone and body language, will be oblivious to social cues, will not use, or understand, the more subtle and indirect aspects of communication and interaction (such as humor, sarcasm, coyness, etc.).  A stereotypical ‘Aspie’ will have difficulty forming and maintaining social/emotional relationships — at least as they are expected to function between neuro-typicals — either because of a lack of related abilities, comfort, understanding, interest, or some combination thereof.  A stereotypical ‘Aspie’ is not empathetic.  And, when you track things back to so early an age as one might hope to first get a child diagnosed, and as a result, helped….if nothing else, a stereotypical ‘Aspie’ avoids eye contact.  Most people seem to ‘know’ this, not just in regards to Asperger’s, but in regards to Autism in general.  It’s practically Autism101.  And yet, it’s not always true.  My son is one of several autists I know, for whom any consideration for early Autism evaluation was denied, indeed, brushed off, all because he made eye contact.

Sure, the developmental specialist at our family practice, and then the team of evaluators for Early Intervention, readily enough agreed he had an array of developmental disabilities, when we first expressed particular concern, around the time he was one year old.  Soon enough, they agreed to bring in a specialist in SPD, who felt that the notes I’d prepared for the evaluation, alone, painted a clearer picture of that disorder than most people she’d diagnosed.  The intervention services they offered us expanded, theoretically to address his now more completely understood needs.  But Autism, even the more fuzzily-defined bit of the spectrum called PDD-NOS?  “He can’t be autistic, he’s not a toe-walker, and moreover, he makes eye contact.” No one was willing to look at my notes, or bring someone in to look at my child, not for that, oh no.  Not even after everyone agreed that he could not have a simple (haha) case of SPD, because there were behavioral aspects to his challenges which could not be explained by the sensory disorder — behavioral aspects which appeared to function in Autism-like ways, and which could also not be explained by neurotypical behavioral problems, because otherwise the ways we’d been dealing with them, would have resolved them.  When you got down to it, everyone agreed that it sure seemed like he also had Autism, except for the fact that he “couldn’t” have Autism.  It gets harder yet to laugh at that when you think again on the fact that my child is not the only one to whom these great bounds of reason were applied.

The thing is, my child is not typical, when it comes to how he deals with eye contact, he’s just not atypical in the typical-for-an-autistic way.  Instead of inappropriately avoiding eye contact, he inappropriately fights for it. He will merrily, and endlessly if not interfered with, try to win the eye contact of someone studiously ignoring him.  He will contort himself into the personal space of someone making a blatant effort at avoiding him.  This is entertainment, for him.  This is a mildly frustrating, yet satisfying — if distinctly one-sided — social interaction.  The other person is part challenge, part prop, and he is, in a way, self-entertaining though this use of them, whether they want him to or not.  Similarly, if someone else is interested in him and initiates eye contact as a precursor to other interaction, he will often enough miss the cues, or be missing the skills, to follow up as they hope.  For him, it is enough to make the eye contact, or to play peek-a-boo style games that revolve around it.  What is neurotypical is for eye contact to be an inherent part of any level of social interaction.  What is typical for the atypicality of autism is for eye contact to be an impediment to the ability to handle social interaction.  What is typical for my atypical-atypical child, is for a fixation on eye contact to BE the social interaction. This isn’t to say that the preceding illustrates the extent of his social profile, but it does — I hope — exemplify my greater point.

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  • Still to come, Part 2 moves on from the “not the typical atypical” reason behind failure to diagnose, and looks at common misdiagnosis.  Part 3 focuses on ways in which having commonly co-occurring conditions can alter the ways symptoms of each diagnosis manifest.  Part 4 deals with the timing of diagnosis.
  • This page from the Autism Society of America discusses diagnosis and consultation.
  • The Child Neurology and Developmental Center offers this informative page on their Pediatric Neurology site, relating to the question of who should be evaluated for Autism or a Pervasive Developmental Disorder (PDD).
    Child Neurology and Developmental Center
    www.childbrain.com

    1510 Jericho Turnpike
    New Hyde Park, NY 11040
    Tel: 516.352.2500
    Fax: 516.352.2573
  • As a point of interest — Ash’s social profile more closely matches that of someone with Williams Syndrome than that of a typical autist.  There are a LOT of different kinds of symptoms of WS, but the common social profile traits involve things like a hyperfocus on eye contact in social interactions, a complete lack of stranger danger, very social personalities, an attraction to adults over peers…

 

 

Early Intervention: get help helping your kids

Early Intervention Program

All parents ask themselves — whether or not they admit it, and however they frame the question in their minds — if their child is “normal.”  But like so many of the important questions in life, that one leads to as many, if not more, questions as it does answers…  In what way?  But what does that mean?  For now?  For later?  For…forever?  Why?  And how?  And what in ?%*@! do I do about it now?

Some parents might get beaten to the punchline when it comes to asking the controversial “normalcy” question (which can often feel like getting sucker punched), if their child’s pediatrician or general primary care physician is concerned about their development.  Those parents have probably already heard about Early Intervention, or, dare I say, should have already heard about it.  If a baby was, like mine, born prematurely and/or with other health issues, then the pediatrician (or developmental specialist of the family practice, if the pediatrician or PCP belongs to one) was probably watching and waiting for when they’d have to bring it up.  But we all know (often after we or someone we know has had to learn the hard way) that as much as medical professionals are useful and necessary resources, the one thing they cannot know more about than we do, is our own children.  So, if you have reason (or gut instinct) to suspect that your child might have some manner of developmental disability, there is NO reason why you cannot be the one to bring up Early Intervention with your child’s doctor, and seek a referral.

Early Intervention is a national (actually, semi-international) program available at the state level, which works alongside parents and doctors to provide a variety of therapeutic and support services to eligible infants and toddlers (up to the age of three) with disabilities, and their families, including:

* developmental assessment

* family education and counseling, home visits, and parent support groups

* special instruction

* speech pathology and audiology

* occupational therapy

* physical therapy

* developmental therapy

* psychological services

* service coordination

* nursing services

* nutrition services

* social work services

* vision services

* assistive technology devices and services

While E.I., like all programs, has its limitations and restrictions, it is actually very inclusive and accommodating of different issues and needs.  My husband works an irregular schedule and I have a mobility impairment, so my son received S.P., D.T. and O.T. therapy services each week, all in the comfort and convenience of our own living room.  And, because we met income standard requirements, all his assessments, therapy services and even some therapeutic toys and tools, ended up costing us nothing.  So please, please don’t take for granted that it won’t be worth your whole to look into, because you think you won’t be able to take advantage of anything they offer, “even if they offer what you need.”  What’s more, it will be worth your child’s while. Early Intervention is just that, and a key word there is, “Early.”  Not only is less time being wasted, by having your child begin getting all the help they can, as early in life as they can, but there is less potential being wasted, because some time can’t be made up.  Some developmental disabilities (like my son’s Sensory Processing Disorder and Autism) can never be “cured” because they are not afflictions of the brain, but a matter of the construction of the brain — but they can come closer to being cured if they are treated while the child is still at an age when the brain is malleable, still developing and changing.