I keep having the oddest experience. I will be somewhere and I will see a child who seems totally fine. They are chatting with their mothers, they are playing with other kids, they bring their moms flowers they picked for them, they are pointing… they don’t present as autistic at ALL to me. And then the mother will tell me that her child is autistic. (I actually wrote a Sunday strip about this that will run sometime in the next month).
I never argue with the parents even though, inside, I am always thinking, “Excuse me, but how is THAT autism?!” Usually, when I say that I also have an autistic child they are excited to speak with me. Until they meet my son (who is severely disabled). Then, it’s quite a different story. Their reactions have run the gamut from being completely freaked out and worried that their child might be headed in that direction, to insisting that MY son doesn’t have autism at all because, as you can see by little Henry here, autism is a much different animal than that. Um… no. Unfortunately, MY son is the one presenting with classic autism and yours is the one who isn’t.
My goodness, you might be thinking, it’s not a competition! Can’t they BOTH be autistic? And the answer to that is, of course they can. The autism spectrum is an extremely broad one, and the kids on one end will present nothing like the kids on the other end. It used to be that you had your Aspergers on one end (who are your high functioning brilliant but awkward kids) who never had a speech delay but have a very hard time with social skills and cues. These are kids who go on to have jobs and friends and families, and who are able to support themselves as adults. In the middle were your moderate to high functioning autistic kids. At the other end were your severely autistic kids. The kids who rock. Who don’t speak. Who are self-injurous and have horrible behavior problems. Who make no eye contact and bang their heads. These are the kids who end up in institutions because their parents cannot handle them. These are the kids who will require constant care for their entire life. And that, my dears, is QUITE a broad spectrum indeed.
But tonight, my best friend told me that now they have added sensory integration disorder to the autism spectrum and they are thinking of adding ADHD to it too. That would move Aspie kids more to the middle of what would then be an ENORMOUS spectrum. Kate made a very good point. The problem with this is that when you label everybody as autistic, then suddenly no one is. And some people really ARE and they need help that they won’t get if everyone and their mother can suddenly qualify for a slice of the limited autism resource pie.
I guess I don’t understand why the medical community is suddenly ready to throw everyone who is the slightest bit quirky an autism diagnosis. Can’t you just be quirky? I remember when every kid suddenly had ADD or ADHD, and now it seems like every other kid has autism. But now if ADHD really is added to the autism spectrum… Oh boy. The sky’s the LIMIT on where this thing could end up.
There really is an autism epidemic going on, but in my opinion, it’s being masked and watered down by the plethora of kids who are being misdiagnosed with autism. I worry that this is going to cause autism to start flying underneath people’s radar’s again. Something is causing the very real and rapid increase of this disorder, but if the public starts viewing autism as mild, easily treatable and slightly irritating only, then kids who are at the lower end of the spectrum will really suffer.
Speaking as the mother of one of those kids… this breaks my heart.
About Clear Blue Water (my comic strip) and me and mine 
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November 18, 2008 at 3:01 am
Kate
I hear you, Karen. My autistic son is higher-functioning than yours, but he’s a lot lower-functioning than a child who has “just” sensory integration dysfunction. When the woman whose daughter is sharing Joshua’s hospital room told me her sensory-sensitive child was autistic (after I had been listening to the conversation they were having & I watched her interact appropriately with the nurse, doctor & a visitor), I asked, “Where was she diagnosed with autism?” And when the answer was, “Well, her diagnosis is SID, but that’s part of the autism spectrum now,” I about fell off my chair.
I mean no disrespect to parents whose children have sensory issues, but there is a WORLD of difference between a child who has sensory integration dysfunction and a child who has SID & autism and it bugs me to see that the DSM-IV criteria for an autism diagnosis seems to get thrown out the window nowadays.
The visitor who came to see our roommate told me how she had diagnosed a child with autism (this woman works as an OT ~ let it be known that they are not legally allowed to diagnose as it’s not their area of expertise) based on…. wait for it….. the child (age 2) had spilled a cup of water down the front of their shirt & then had a complete meltdown. I am so not kidding! I looked at the woman and said that there is a whole list of criteria that has to be met for a child to qualify for an autism diagnosis and having a fit because they spilled water on their clothes doesn’t make a child autistic. She asked me what I know of autism and quickly shut her trap when I told her I have 4 kids diagnosed on the spectrum, including a child who actually HAS autism (it helped that the nurse in the room knows David from his previous surgeries & quickly spoke up to validate what I’d just said).
I don’t see Asperger’s as a disability and I don’t view SID or ADHD as a disability, either (and yes, I have kids who all 3 of those conditions, so I am speaking from my experience with them). Autism ~ the REAL autism that you live with every day ~ is definitely a disability. I think it sucks that this conditon that is often truly debilitating (again, NOT referring to those with Asperger’s or high-functioning autism who are able to function in the world independently) is being reduced to a definition for every quirky, “different” child out there. No wonder there are Aspies & HFAs out there screaming that they don’t need to be “cured”. They’re right! They don’t!!! But those individuals who are severely autistic and unable to function independently DO need help, but because autism has become the “diagnois de jour”, they aren’t going to get it. It’s simultaneously sad & infuriating.
November 18, 2008 at 5:44 am
Rai
Hey Goodlooking,
I’ve adopted a saying I once saw on a T-shirt.
* You’ve seen one child with Autism *
* you’ve only seen one child with Autism *
It’s a shame but I’ve found that many people just cannot grasp the concept that disability labels are not absolutes. There are different levels of Blindness, different levels of Spinal Injuries and different levels of Autism.
As for Aspregers I agree. I keep telling my Aspie daughter that the label only means she’s to smart for her own good. It is an explanation not an excuse. AFAIC it is neither a Physical disability, a Mental disability or a combination of both – it’s a Social disability. Her problems are mainly dealing with the erratic behaviour of kids her own age (thus affecting her Education) and Adults who believe she’s mentally deficient because of the label. All socialisation issues.
November 18, 2008 at 6:54 am
Shari
I didn’t realize there was such a wide spectrum. I remember seeing a commercial about autism saying that 1 in some number of kids is autistic. I would think back to everyone I’ve ever met and found that number hard to believe. The fact that it was a commercial made just not trust it and not look into it. This sheds some light on where that number might come from.
I love that this comic and blog, gives me more things to think about and opens my eyes a little more.
November 18, 2008 at 9:05 am
Leslie
My friend who is a nurse thought my daughter Kaidis might have been on some shade of the spectrum at first when we initially met because she refused to really speak, she would not call me mom just screamed, and when she got angry she would bang her head on things hard. But now I realize she just didn’t talk to bust our chops and she has a nasty nasty nasty German temper. Now that she can express herself, she does not need to bang her head any more. But Jackie was not the only one afraid and I can see how other people would view her, there were times I wished I had some holy water myself. People need to be educated, Doctors apparently need to be educated on what Autism really is too and stop being lazy bastards and throwing the word around just to get people out of their office. This whole ADHD and misdiagnosis thing is predominantly laziness. Laziness on the Doctor’s part for not exploring the issue further and the parent for not wanting to deal with a quirky kid. Just shove a few pills down his throat, make a teacher deal with him, it is a sick sad world.
November 18, 2008 at 9:54 am
Karen
I completely agree. I have worked with classically autistic kids, and have seen behaviors in my own kids that some would consider “on the spectrum”, but a lot of that is just being kids and being quirky. Schools don’t want to deal with quirky kids; they want everyone to behave the same way. Anybody who doesn’t behave “normally” is worthy of a diagnosis these days.
November 18, 2008 at 11:12 am
Nicole
My 7 yr old stepson has ADHD and his mother told me that his dr suspects he may also have mild Autism. The issue is that even when he’s on his ADHD meds, he tends to “act up” sometimes.
What his mom fails to see is that he has a semi-neglectful home life. His mom work 16 hr days and his stepdad works in his home office and shoos my stepson away and makes him play by himself.
Also, he doesn’t get to see his bio-dad, my fiance, too often since he works weekends and only has middle of the week off from work.
I always suspected it is less ADHD/mild Autism causing his behavioral issues…it’s his LIFE. He needs more therapy and counseling and less meds and diagnosis of things that might explain one or two symtoms but not everything.
They also want to put him on anti-anxiety meds and depression meds along with his ADHD meds. He is 7!!!!
These days, people expect young children to sit still, listen, and have patience. The minute a child shows a tiny bit of hyperness or unwillingness to listen to authority, they are slapped with a label and drugged up so badly they barely move from the couch….
As a mother to a 10 month old, I hope and pray I have the strength to research, research, research anything my son’s dr and teachers tell me. I’m not saying I would completely deny him help if his doc tells me he has something, but I won’t go blindly into that diagnosis and medication…
Now with children that fall on the severly or even moderatly Autistic scale, from what I understand, even the parents can see that is true. But those who are “mild” or considered ADHD just because they want to run circles in the mall….that should be researched by the parents before they drug ’em.
November 18, 2008 at 12:56 pm
Lyle Gentry
I was diagnosed with ADD nearly 20 years ago. The Doc didn’t act like it was that big of a deal and I was never prescribed any meds for it.
The way he explained it to me was that it really wasn’t a “disorder” but a different way of focusing on a given tasks. He said folks with ADD tended to hyper-focus on a single task rather than divide their attention among multiple tasks. It gives them the ability to focus on extremely intricate details but can limit their ability to multi-task. At least that’s the way I understand it.
He said I was in pretty good company because they were pretty sure that Michelangelo had ADD–which helped him with the intricate details of his artwork and was probably why the Pope had to threaten him with excommunication to get him to finish the Sistine Chapel.
I know that I’ve gotten “wrapped-up” in projects in the past and would forget to do other things–like sleep or eat–until the project was finished. Even now I prefer to focus on one thing at a time. I’m not too hot at juggling multiple things, but I never really considered it a handicap and I sure as heck don’t know what it would have to do with autism. I’m pretty sure we’re over-medicating a lot of kids (and adults) which is sad because it takes away from those that truly need medical intervention.
November 18, 2008 at 1:20 pm
Ted Seeber
I for one would really like to see Asperger’s removed from the spectrum. And ADHD, and ADD.
A while back the question was asked in this blog about the rising numbers of Autistic diagnosis, and I brought up the male Aspie theory that it’s really just a feminist conspiracy to label normal boys as disabled.
I myself, have, at times held the suspicion that even lower functioning people than me are actually the smart ones- based on the idea that the man who doesn’t speak may be thought a fool, but the one who speaks removes all doubt.
I have my obsessions, my different way of focusing on given tasks. I consider that a plus- and join with the Institute for the Study of the Neurologically Typical in considering a good deal of “normal” people to be the real mental deficients. Non Compos Mentis, indeed.
In fact, I strongly suspect that would be a better approach for ADHD, ADD, and Asperger’s kids- let them know that they are special, let them know that they’ve got skills that are desparatly needed in today’s global competition marketplace, and teach them to develop the skills they DO have.
November 18, 2008 at 1:43 pm
Ted Seeber
Oh yeah- and I remember back when I was 8 or 9 or 10 or thereabouts, my family didn’t know what the heck was wrong with me. All they knew is that given what they thought was a great social situation for me to make friends in, going to a Christian Camp up near Silver Creek Falls, I’d always avoid the crowds of kids, and go off into the forest on my own. I liked to be alone- and Christian Renewal Center offered me the trails to be alone on.
November 18, 2008 at 2:40 pm
norm
The rush to a pre-determined diagnosis irritates me too. Part of my son’s diagnosis (when he was five) included comments that contradidted our experience and even the doctors own experience with my son (she ignored things happening right in front of her, and ignored things we told her…probably because it would have complicated her diagnosis.)
But, when she said he had high functioning autism, just trying to deal with it, set us off balance…arguing the point wasn’t the first thing on our mind.
And why argue? Our son has plenty of things he has to deal with, to be sure.
He was asked to leave his first pre-school and only mainstreamed (with help) the year before last (second grade)
I’d get into more specific issues…but then I’d go on and on…and I doubt anyone really wants to read all about that.
Anyway,
the point is, my son’s not just a weird kid…there is something making his (and our) life challenging, but I’m afraid just lazily grouping every one under one diagnosis won’t really help figure out what’s going on with these kids.
On the other hand, maybe lumping them all together will form a group big enough to get more political pull, public attention and help.
Just so they haven’t confused things to the point the help is all scattershot and pointless.
November 18, 2008 at 2:52 pm
Ted Seeber
In response to norm:
I was disciplined at least once every two years for anti-social behavior starting in the first grade and continuing up to college.
Mainstreaming was the norm, but I went through first grade twice because of anti-social behavior.
I still have bouts of incredible, unreasoning anger. I’ve yet to keep a job for more than three years running. Eventually, I WILL do something to ruin whatever progress I’ve made. But that, in and of itself, is as much of a blessing than a curse- raises don’t come easy in IT, but changing jobs can result in a raise.
Maybe there are no weird kids. Just varying degrees of strangeness, influenced by pollution and frightening amounts of bigotry.
November 18, 2008 at 3:01 pm
Ted Seeber
I can’t believe I’ve ended up putting 4 posts in your blog today, but things just keep coming to me, and I’ve had parents of autistics in the past thank me for telling my story, it seems to give some hope.
On your cartoon today- I’m with Seth. I’ve had relatives do that to me in the past. And no, I’m now 38, and you can’t expect a handwritten thank you note or picture of what I bought from me- but I try to make that up in other ways, which is why Shannon’s grandmother this weekend is going to get some of my first batch of sausages from the meat grinder I purchased with the birthday money she gave me.
I still can’t draw pictures worth a darn, which is why I’m not a video game programmer.
November 18, 2008 at 3:03 pm
norm
There’s another thing…and I don’t know if I’m just being selfish….but I think if more people get diagnosed and if more people identify with “autism” then, maybe it won’t carry such a stigma.
Then maybe, when people see a kid bonk himself on the head, talk baby talk to his hands in class, or lick the new kid instead of saying “hi”(luckily, Max hasn’t done that one in years), they’ll be more understanding and not blow him off, stare, or pretend he doesn’t exist.
November 18, 2008 at 3:26 pm
Ted Seeber
I long ago gave up on that possibility, norm. NT society is based on a million years of group identity evolution; those not in your group are not allowed to be in your life for a reason. And the stigma comes from that idea that somebody “weird” is not going to be able to conform to that particular set of evolved customs that kept the tribe alive through the ice ages.
Totally invalid today, but that sort of groupthink identity is what got left behind. And us ACs get caught in it because we “look”, from outward appearances alone, like we should fit in (no missing or extra limbs or eyes, skin color within normal for our family, etc). And yet even Catholic Priests sometimes don’t get it!
November 18, 2008 at 4:19 pm
BJMallory
My son Steven is now 21 years old. He was diagnosed with ADHD in grade school. I knew there was something different about Steven from the time he was an infant. He was my third child so I’d had some baby experience before him to draw upon.
As an infant and toddler, he was *very* serious. He never busted out with one of those hearty baby belly laughs. Every now and then you could coax a half-hearted chuckle out of him if you really tried. Also, when it was bedtime (7 pm on the dot every night) all I had to do was lie him down in his crib. No bottle, no rocking, nothing. He’d turn over and go to sleep. No fussing. Seriously. When he was old enough to get up on all fours, he began rocking back and forth, banging his head on his crib headboard. I had to make sure it was padded high enough so he wouldn’t hurt himself, and pad it higher still when he learned to sit up because he would rock himself back and forth, shaking his crib violently. He rocked like this all throughout childhood. He’d be sitting on the sofa just rocking away, banging his whole upper body into the back of the sofa making the whole thing shake until we’d tell him to stop. Sometimes he wasn’t even aware he was doing it. He still does it now but very rarely.
He suddenly seemed to turn into quite a different child when he turned two. It’s like someone flipped a switch. He was WAY more into the terrible twos than my previous children. And SMART. You couldn’t let him see you do something you didn’t want him to know how to do, even one time, or it was all over. It took years for me to un-train myself from positioning my body between me and Steven’s view when I was doing something I didn’t want him to learn how to do, like unlock something. If he were by himself, he was the sweetest, most well-behaved child in the world, but let there be just ONE more child around and forget it; Steven was all over the place. When he started school it became a never-ending nightmare of phone calls, nasty notes, stern looks from the school staff everytime I’d show up to pick him up, etc. I KNEW something was amiss and I BEGGED the school to help me find out what it was. They told me my child was just lazy and if he wanted to behave properly and do his work, he could. And by their looks I could tell that they were thinking “and if you weren’t such a stupid lousy excuse for a mother, he’d be alright.” Because it’s NEVER their fault or their mistakes that make things worse. Oh no, the teachers and the school do EVERYTHING right. Like the 4th grade teacher that put Steven’s desk facing the wall and put two 4 1/2 foot high bookshelves on either side of his desk so that he was walled off from the other kids in class. And then wondered why he hated her. I found out years later that this woman used to call him names and make fun of him in front of the other students. She’s damn lucky I didn’t know that THEN.
By the time I met a woman (who would become my best friend) who’s child also suffered from ADHD, Steven was in 5th grade, hated school, hated anyone in authority and the school had to call my husband instead of me about Steven because I could no longer deal with them in a civil manner. There were many times that Steven had been blamed for things he didn’t do or start (not that I think my son was a perfect angel, I KNOW he wasn’t but he’d become their convenient scapegoat) and I could no longer accept every word they said as truth. My friend told me to take my son to a doctor in our area who carefully evaulated Steven and pronounced him ADHD. He was on a few different medications from 5th grade to high school. The day he told me that he didn’t want to take medication anymore – he was about 16 – was the day I let him stop. He voluntarily stays away from caffeine, certain food additives and too much processed foods because he knows they affect his behavior. I’ve always told him that the world pretty much doesn’t care about his ADHD and he will have to overcome it as best as he can and he has tried very hard. There have been stumbling blocks, very bad times (his teenage years were HELL) but there have also been very good times. He still lives at home, works sporadically and hasn’t really expressed an interest in “launching.” I will work on that with him, and maybe I’m doing the wrong thing but I kind of feel like he needs this extra time and leeway because of what he went through as a child; having a learning disability and having a young mother who didn’t know what she was dealing with – and worse – having a school filled with people who SHOULD have known better and acted like they didn’t. Even though he dropped out of high school with only 15 credits to go (and that KILLS me), Steven is highly intelligent, very gentle and good with small children and animals and gifted artistically and musically. Athletically, he’s very good with a skateboard – he’s one of those kids you see flipping through the air on them. I know I’ll never know what parents of autistic children go through and I should count my blessing with Steven and I do. I don’t feel that Steven at all belongs on the autism spectrum. Given what I’ve learned from reading CBW and from seeing a friend’s autistic child, I know these two things aren’t on the same page at all. Steven will eventually “launch” and he will be able to get married and have a family someday if he so chooses. Severely autistic children will never do these things. How can they say Steven and “Seth” belong on the same spectrum?
November 18, 2008 at 5:14 pm
Sara
I have a 7 yr. old with (high functioning) autism. He’s in the 1st grade (self contained classroom). He was dx’d when he was a hair over 2 and received early intervention. By the time kindergarten came around he was already well versed in school routines and was one of the only kids NOT crying on the 1st day of school! Anyways, he’s verbally delayed thanks to dyspraxia, but still verbal. (Digression: Let’s get a cheer for those hard working speech therapists who care and work so hard! I know my son’s progress owes a lot to some very special people.) I see the tolerance for my son’s behaviors detiorating rapidly, almost at the same rate he’s growing physically. When he was 3 people seemed to accept a lot more from him, called him “cute” and stuff, now some of them call him an undisciplined brat (grrrr). Anways, I also have a 9 yr. old son w/ ADHD. He was dx’d at 5. And yes, I did go the route w/ meds, along w/ behavioral modifications therapies. He’s doing well, 2 As and 3 Bs on his last report card. (4th grade) A couple years back his Dr. told me he felt my son might be on the spectrum somewhere. Recently my son’s teacher told me she was worried that his language expression and his social development aren’t quite age appropriate. I have to agree, he presents more like an NT 7 yr. old than like a 9 yr. old. *sigh* So, I’ve gotten things started for an evaluation for him.
As for me, I’m a 38 yr. old woman who was dx’d with ADHD at ate 6.5 yrs. (Back then they simply said I was hyperactive) and dyselxia.
Oh, drat… I just completely lost my train of thought!
Oh yeah, the spectrum, I always figured spectrum kids are like rainbow colored snowflakes. They’re the “same” thing and yet each one is a unique and glorious creation in they’re own right.
November 18, 2008 at 7:39 pm
Ted Seeber
One final word though- there’s one very famous “kid”, though he’s in his 50s now, who rocked, banged his head, had delayed speech. When he became more successful, he became briefly famous in the mid 1990s for running high level business meetings over instant messaging- on a LAN contained in a single room.
His name? Bill Gates.
NEVER underestimate an autistic. Most of what we think of as “low functioning” autism (truly low functioning, the type that ends up in asylums) is very likely caused by being institutionalized as much as by the autism.
Almost *all* autistics have some “savant” talent- every single one of them different. After I was diagnosed I met one employed by Tri-Met here in Portland- his job is to route “dial-a-ride” vans. His obsession was always maps and mapping, and he does a better job at it than anybody else.
High functioning autism is actually *worse* in some ways- at least the low functioning autistic has a half of a chance of their obsession being identified early, and with coping skills and training, honed into a marketable skill. With high functioning autism, it can be a bit of a crap shoot- with the talents hidden by the misbehavior. I’m still learning my talents.
November 19, 2008 at 12:51 am
asdmommy
I’ve been pondering your post all day, wanting to respond, not wanting to respond…not wanting to disagree with you because I don’t really, but I’ve still been thinking about this post all day so here I am. You really made me think, and for that I am always grateful.
I’m reminded of some great Mommy writing where the author talks about recognizing other “special needs mothers” in the check-out line at the store, and how there’s no heirarchy among us. I’ve sort of always disagreed with that, because I do think there is a heirarchy – or at least something, that’s probably not the right word, really, but there’s something to it. I have always been cognizant that my child’s journey through autism and life is not the same as ANY other child’s journey with the same diagnosis. I’ve always tried to be especially sensitive to the fact that my child’s struggles (he’s probably one of those kids who would seem “fine” to you, and I’ve had people say that to me before, but I assure you, he’s not “fine”) are far different than my dear friend up the street who has a child with more classic autism. But I’d like to hope that at our core, we can share some things. And her son would never scare me at all in terms of what it meant for my son, nor would I think her son and mine have a different disorder. Those people who treat you that way are just idiots.
I admit to being highly offended and hurt the one and only time someone said something to me about my son not having “real” autism. I’ve also had one person ask me where we got his diagnosis (a well-respected university hospital by a highly regarded developmental ped who specializes in autism), and that irked me as well. I really don’t need to waste my time dealing with people like that; I have enough on my plate. While it’s partly anger I feel when faced with those kinds of folks, it’s also just plain tiredness – I am too busy dealing with the daily issues to spend time trying to convince some random person in the waiting room at the doctor’s office that my kid had issues, you know?
I guess my point is that I’d like to think that we can all learn from each other. I’d like my child’s journey (and my own challenges as his parent) with autism not to be minimized simply because he is (now) verbal and personable (to adults, anyhow). Yes, he is bright, and that means some good things and some difficult things. We struggle every day – even though he’s on an IEP, he often slips through the cracks because he’s not drawing attention to himself. He behaves well at school and handles the routine well, so people don’t pay any attention to him. Meanwhile he’s getting shoved and hit in line and has hardly a friend in the world. He can’t eat at lunch because the cafeteria is overwhelming. He wonders why no one ever invites him over. You know, the usual sensory and social challenges. I know these are not necessarily the same concerns that you have with your child, but I’ll bet we could sit down and find many places where the challenges are the same.
I guess I don’t think there’s danger of autism being so watered down it changes everything, but I also know I might not have any idea what I’m talking about. But from my perspective, all of those who have gone before are helping the ones who come after – no matter their “functioning” level. Something the OT at school learns from MY kid might help the one coming in next year. And my kid probably benefitted from the kid that went through last year. I’d like to think we’re a tribe that’s paving new ways for all those kids and families coming up behind us, whatever their needs may be.
I am one of those who believes SID is on the spectrum, and quite frankly, I think ADHD is on there too. I don’t think there’s any need to call them autism, but I do think they are part of the same spectrum of issues. That’s just my perspective and opinion. I guess partly because I have yet to see a younger child who is diagnosed with SID not later be diagnosed (accurately, I believe) with ASD in some form. Again, that’s just my experience.
While SID is probably my son’s biggest challenge, he also struggles with OCD issues, global developmental delays, pragmatic language, health problems, anger issues, anxiety, the fact that for all his words he possesses, he still can’t relate to any boy his own age, emerging academic issues as his hyperlexia starts to become problematic in terms of comprehension, etc. Yet he’s probably the kid who would walk right up to you (or any other stranger, which completely freaks me out) and say hi and ask you how much you weigh.
Please know I’m not disagreeing with you or trying to invalidate your words in any way; I just wanted to share some thoughts. I can’t begin to know what your days and nights are like, but I’d like to think I at least have the tiniest clue about it, and offer you my kindest thoughts and prayers. Sorry to be so wordy, and I wish you hope and peace in your journey with your child.
November 19, 2008 at 8:51 am
joshiesmom
My son has ADHD and we use medicine to help him. When he is on his pill he is a wonderful kid. When it wears off he becomes easily frustrated, disrespectful and very hyper. He can’t watch a movie or sit still to play video games. He annoys adults and kids his age or even younger. Until he was diagnosed we were outcasts everywhere we went. I had never dealt with autism or anything like ADHD so I was frustrated and depressed. Since his pill wears off at 4pm, I still haven’t been able to make new friends in years. My husband is in the military and every time we move, my son angers the other moms and kids we meet. They don’t want to deal with us. Often they feel like I should just discipline him more. But when I try, he screams and people think I’m abusing him. Recently we joined boy scouts and it was so nice at first. But after a few meetings my son began to stand out. The other boys don’t know what to think of him. So when I read this comic I feel a real connection. I see Seth and how people treat him and the family and I say that’s us! Many things he does are similar to things my son does too. I know my son isn’t autistic, but we are treated differently. I love this comic and insight it provides. Thank you so much!
November 19, 2008 at 10:06 am
meansomething
This is a pretty civil discussion considering how heated these things can get. I feel I’ve learned a lot from reading it.
So many people have mentioned “quirky kids” that I wonder whether you are familiar with pediatrician Perri Klass’s book Quirky Kids. It is a parenting manual that might be of use to parents of kids either diagnosed or not, on the spectrum or not.
November 19, 2008 at 10:50 am
Leslie
I have learned so much from this comic. It is just like before I worked in fast food and retail, I had a negative opinion of the people behind the lines. Now having fought in the trenches I have more empathy knowing it is not easy. Bad management, slackers mixed in with the workers, bad scheduling, and inadequate training make for sometimes a very difficult working environment. The same goes for special needs kids. Now thanks to CBW when I see a kid throwing a temper tantrum in a store, I do not think, “rotten brat, shut up,” I think, “he could be autistic and wants his french fries, the mom is probably doing the best she can.” Kaidis will say “Baby sad.” and I say, “I know Kaidis, but his Mommy is there and she will make it better.” We all need to have empathy for our fellow human beings, that is the epitome of the golden rule, how would you feel if… I know I have been a jerk in this forum before, but chalk it up to the ignorance of youth, I am still trying to make my way in this crazy world.
November 19, 2008 at 11:33 am
clearbluewatercomic
Kate, this is why you are me best friend. We see eye-to-eye on so many things!
Rai, I like that saying! I have two Aspies in my extended family and they are both fine. You are right about the social stuff, but one of the Aspies is an adult and I can say that it comes in time. If we can get Aspies through their teenage years with their self-esteem intact, they can do ANYTHING!
Shari, I know what you mean. If 1 in every 99 boys born these days are autistic, then where are all the disabled kids? Well, they are out there, it’s just that it’s not like a physical disability where they stand out. Even my low-functioning son can and does pass for neuro-typical upon inspection in a store if he’s not acting up or stimming. He’s a very handsome kid, if I do say so myself. I’m glad you like the cartoon blog! I hope you’ll keep reading.
Leslie, I have some experience with this. Because I have such a disabled child, if any of my other kids even BREATHED wrong when they were young they were immediately sent in for testing because the doctors were sure that something bad was in the works. It made for a stressful life until they turned about 5 and were deemed “Safe” from the autism goblins. That said, I do have another child that we believe is on the spectrum, but it’s sooooooooooooooooooooooo mild in comparison that we haven’t pursued a formal diagnosis. I see no need for it. The child is doing fine in school and a label is just that. A label, unless there is some need for treatment, (which in this case there isn’t). This child of mine will be fine.
Karen, that’s because quirky kids disrupt the class too much. I actually enjoy quirky kids the most. The quirkier the better!
Nicole, I agree with you about the drugging. I dislike that a lot. I hope your stepson can get the help he needs, and if it is just his neglectful family life, I hope they realize it before it’s too late.
Lyle, that sounds like ME and I’ve never been diagnosed with ADD. Who knows if I have it or not, but I do hyperfocus and if I have more than one thing to do at a time, pretty much nothing gets done, but give me one interesting thing to do and I can make some pretty significant headway!
November 19, 2008 at 11:46 am
Christina
You took the words right out of my mouth with this post. I also feel like we’re moving in a direction where if a child doesn’t quite fit into the mold of what society deems ‘normal’ then there must be something wrong with them so we stretch the diagnosis so far as to include every child who behaves even a little oddly or different.
I was one of those ‘quirky kids’ everyone keeps talking about. I was highly sensitive, nervous and socially awkward. My interests were very different form other kids my age and I have little doubt that if I were born in the 1990’s rather than the 1970’s I would have gained a diagnosis somewhere on the Autism Spectrum. I was diagnosed with ADD and my mother refused to medicate me and instead took me off of refined sugars and put me on an organic diet. I am a normal adult with a family, still somewhat socially awkward but I’m happy with my life and with who I am. As an adult I no longer feel the pressure to adapt to those around me that I did as a child and as a result am a much happier person. I think many of the kids today (especially the high functioning ones) are being medicated and not may not reach their full potential as a result. We have to remember that some of the most forward thinking people in history were labelled ‘odd’ or ‘strange’ as children. I wonder if one result of our current (and possibly future) diagnosis criteria will result in a loss of some truly brilliant thinkers because our desire to have a child fit in socially seems to be trumping everything else.
November 19, 2008 at 11:52 am
clearbluewatercomic
Ted, I’ll respond to all of your comments here. I don’t agree about taking Aspergers off the spectrum. As I said before, I have a couple in my family and the social deficits can be significant.
You are assuming that lower-functioning autistic people don’t talk because they don’t want to, but that’s not always (or even most often) the case. They don’t talk because they CAN’T, and this is often a great source of frustration for them (imagine not being retarded, but everyone assumes you are, and you cannot tell them you aren’t.) Hence, the tantrums.
However, I do agree that you need to let Aspies and kids with ADD and ADHD know that they are special and their skills are needed. That’s absolutely true, and a nice way to think about it.
It sounds like you are self-destructive, and that must be hard. I hope you can keep making forward progress without destroying your progress this time. However, if I got a raise every time I changed jobs, well, that would be enough incentive to keep me on the prowl!
Post as many times as you like, you are welome here. You bring an intersting perspective and you might help people. I think it’s nice of you to make sausages as a thank you, and interestingly enough, my own autistic son cannot draw at all. He’s a teenager and he cannot draw a face. He knows that we have two eyes, a nose and mouth, and hair, but he cannot put them on a circle face in the right order for the life of him. Sometimes I’d like to climb into his head for a few hours and just experience how he sees the world. I think it would give me more compassion and perspective and it would help me to help him.
I have to disagree with you about your low-functioning autistics being caused by being institutionalized. My son is low-functioning and he’s never been institutionalized. Not even for a day. However, he’s a happy kid. He has no idea he’s different, he doesn’t care a bit if he’s stared at, he doesn’t get embarrassed, he’s free to stim and obsess to his hearts content because he doens’t care what people think about him, if he’s happy he shows it, if he’s sad he shows it… it’s a rather free way to be and sometimes, just sometimes mind you, I envy it. Oh, to turn off my mind for a little while…
Not all autistic people have a savant talent. My son doesn’t. In fact, I don’t know one kid with autism who does, and I know about 10 children with the disorder. They all have areas where they are less disabled than others, but that doesn’t mean they are savants.
November 19, 2008 at 12:16 pm
clearbluewatercomic
Norm, I hope things are looking up for your son. I know how hard the diagnosis period can be. I have the same fears and concerns as you. I want the help, so please don’t muddy the waters until no one can get any!
I think there will always be some adjustments that will have to be made by “normal” kids to their autistic peers, but parents and teachers can teach them not to stare, and that would be a huge start.
BJ, it sounds like your son is lucky to have such a wonderful, thoughtful and caring mother. I’m sure you are right that he just needs a little extra time. Some kids do, and I’m also sure that whatever he ends up doing, he’ll do well. I hear you about the standing in front of a kid to keep them from learning how to do something. I still havet to do that with my autistic son, because, though the world writes him off as retarded, those who know him well KNOW that he’s extremely smart. That’s WHY he’s so difficult!
Sara, I will second that cheer for speech therapists. Here’s a hug as you go through the evaluation with your other son. I love your different colored snowflakes analogy. It was beautiful.
asdmommy, what a well-reasoned post. I don’t want to take away the struggle that is there for people who have higher functioning kids. My best friend has a child that is much higher functioning than my son, but she still lives through a very real struggle. Strangely enough, my son’s real horrible problem is NOT autism. It’s OCD. If we could manage to get his OCD under control he would be a different child and probably much higher functioning. I believe we might even find out that he’s only got mild to moderate autism. But every doctor we take him to only focus on his autism and ignore his other disorders. It’s maddening.
Your child’s struggles are not unfamiliar to me. The Aspies in my family have/had the same struggles as children, and that’s why I said our job is to get them into adulthood with their self-esteem intact. This is no easy job given what targets they can be as children. I wish you hope and peace with your journey with your child as well.
joshiesmom, it sounds like your ADHD child’s struggles are similar. With what everyone is writing, I realize I might have been wrong. I guess I didn’t realize how similar they are. I live with a very low-functioning child and sometimes it makes it hard for me to empathize with people who seem to have it much easier. But a struggle is a struggle and it’s hard no matter what the degree is. This is something I’m going to have to watch in myself to keep from becoming a martyr. (I know a martyr. I do NOT want to become one. No one likes a martyr!!!)
meansomething, that sounds like an interesting book. I’ll have to check it out from the library. Thanks!
Leslie, I know what you mean! When I actually worked retail, I had so much more patience with folks behind the counters! And now that I have an autistic child, I find that I cannot judge anyone else because who knows what’s going on! Thanks for writing!
November 19, 2008 at 12:25 pm
Sara
A story to share:
Both of my sons are in Scouts. My youngest is a Tiger. There are 5 Tigers in our Den this year. Last night the boys all earned their Bobcat Badges! (This being the first step in Scouting.) At the end of the evening the Tigers were asked to recite the Cub Scout Law and Promise. Now, admittadly his speech delay makes it hard to understand him, but when the Den Master asked the kids to start, who started first, was loudest and most confident? My son! 🙂
November 19, 2008 at 12:52 pm
Ted Seeber
Speaking of self destruction, as I was reading this I was stimming, and a scab came off. I must have hit a capillary, and it’s a good thing I wore a long sleeve shirt today, or I wouldn’t have been able to stop the bleeding so easily. However, now I’ve got the embarrassment of having to roll up my sleeve today to hid the big bloodstain.
Please try to remember that my thoughts are from INSIDE my portion of the spectrum- I may not have a good view of the lower functioning portion. Closest I’ve gotten to the “can’t talk” is my brother-in-law who has a true autism diagnosis- and in his case it was “don’t see any need to talk”- for the first 17 years of his life. I met him when he was 16, and was just beginning to whisper his needs- he ended up needing a lot of speech therapy just to rehabilitate his atrophied vocal cords, and though he’s happily married today and expecting his first child, he’s still among the quietest people I know.
His problem was some SID, and a completely wrong theory of mind. He just assumed that everybody already knew more than he did even about himself, so why bother talking?
My son, on the other hand- has Cerebral Palsy in the language center of his brain. I call him the anti-autistic. Every possible behavioral problem of autism, completely reversed and flipped around. Not being able to get his vocal cords to say the right phenomes hasn’t stopped him one bit- he just keeps talking with the wrong ones. Where I was shy and wanted to be alone at 5 years old, he’s got 4 girlfriends and only has a problem playing with others when he can’t lead every game. Or when the kids get tired of trying to understand what the game is through his garbled speech and lack of adequate potty training. Remember Vinnie Barbarino from Welcome Back Kotter? That’s Christopher in spades, completely down to being the most popular kid in Special Education Kindergarten.
Those two individuals were my comparison. I’m sorry now that I drew generalizations from them that hurt- I hope Karen can forgive.
November 19, 2008 at 1:59 pm
Leslie
T-Man if Karen can forgive MY past posts she can surely forgive yours. We all have thoughts, opinions, and feelings and sometimes we may express them in an incorrect way or act on incomplete information, but if we remember that we are all fallible humans, then there is planty of room for patience and forgiveness.
November 19, 2008 at 2:52 pm
Ted Seeber
I have to disagree with you about your low-functioning autistics being caused by being institutionalized. My son is low-functioning and he’s never been institutionalized. Not even for a day. However, he’s a happy kid. He has no idea he’s different, he doesn’t care a bit if he’s stared at, he doesn’t get embarrassed, he’s free to stim and obsess to his hearts content because he doens’t care what people think about him, if he’s happy he shows it, if he’s sad he shows it… it’s a rather free way to be and sometimes, just sometimes mind you, I envy it. Oh, to turn off my mind for a little while…
We’ll see if my HTML coding makes it through.
I would say your son is still happy and doesn’t care *precisely* because he’s never been institutionalized. He still has no idea he’s different, simply because it hasn’t been beaten into him that he is different. Almost all of my self-destructive behavior can be logically traced to being told early on that I was different, and being attacked/punished for being different (remember, I didn’t have my diagnosis until I was 30- and was raised in the 1970s in a very conservative/rural community that did not tolerate “quirky” in any sense of the term). Oddly enough, my son would get along a lot better, despite being lower functioning than I am, in “normal” society- his only problem is weird speech delay. Christopher is a happy boy- his first word was “happy”- and that alone is enough to change how people treat him drastically from how I was treated. I’m hoping to keep that going at least.
November 22, 2008 at 12:35 am
Rosesmom
I feel somewhat out of the loop as I am the mother of the one in 5 autistic children that is a girl. She is the light of my life and the frustration that gets me fired up every day. She was diagnosed at the age of 3 in Germany, where the US military had few interventions and less compassion for special needs children. She was verbal, then lost her verbal skills (regressed actually at age 2) and didn’t speak again until she was 6 years old. She is 12 years old and now speaks mostly in weird broken sentences in what I call her “Mr Bill voice” (think SNL circa 1978). Her speech teacher is currently trying to “break her” of this voice. I am just happy she speaks.
I am less worried about how many kids are on the spectrum and more worried about how we address the children that really truly need intense intervention, but get lumped into a cross catagorical classroom because some over confident teacher with 35 years experience in teaching special needs children will not admit they are out of their field of exprertise when it comes to actually “TEACHING” a child with autism. It is more than herding them in a room and forcing them to comply with the standards every other child has to meet. It angers me daily that I have to fight for my child’s right to learn at her pace to meet her needs.
By the way, I am also a health care provider and I help to screen children with all developmental delays. I see many young children with delays that would appear to indicate some type of ASD. I do not however diagnose anyone. I always refer any child with ANY DELAY to the local birth to 3 program or their local school district for an evaluation, AND also refer them to a developmental pediatrician for a full evaluation as well. Most of us in the health care field are not lazy, and we are not looking to throw out a quick and easy diagnosis to get families out of our office (once you diagnose them, they don’t just leave, they come back. Again, and again, and again).
There is a very real need to limits to this diagnosis. There is also a very real need for the educational community to step up, take the lead, be willing to work with our kids (and the ADHD kids, and all the others) not just try to cram them in a cookie cutter pattern to “fit in”. I for one am tired of seeing kids in my office that come with a note from their teacher saying “I think Timmy has ADHD And should be put on Vyvanse”. I want to know where these teachers got their medical training? I want to know why they are not trying harder to teach to each child’s specific needs. I want to know why this country pays sports entertainers and movie stars millions of dollars while the teachers make a pitance to mold the minds of our future generations. Do you see my train of thought here?
I am sorry if I sound bitter. My daughter is 12 years old, she has changed schools for the 4th time since her diagnosis at age 2. She is frustrated with her teacher, she comes home saying “I lost that calculator years ago” bringing to my attention the fact that her teacher has taken away her calculator, her “tool” to do math problems after she has used it for 3 years at her previous school because “All the kids in her class are going to LEARN THEIR MATH FACTS! (Ever heard of an IEP?????)
Okay, I will jump off my soap box for a while. I will let it be, but I will tell you, the battle doesn’t get easier as your child gets older. It just gets more painful to see that you have to continue to fight the same dumb people for the same dumb reasons. Hang in there, fight the good fight, and know that as long as you are pushing for the best for your child, you are never wrong!
November 22, 2008 at 1:44 am
Lori
I see where you are coming from on this post and do agree that these labels are sometimes given to kids whose problems lie more in the environment than in actual disabilities. I do think that adhd overlaps with asd but I don’t know if it should be lumped together with the autism spectrum. I do think that some kids with adhd need support as much as some kids with Asperger’s and high functioning autism. I think that many parents with kids who have HFA/Asperger’s and even ADHD are often unfairly judged because their kids look normal in many situations. I’ve seen some families who have kids with adhd or Asperger’s who are faring far worse than some with classic autism due to lack of support. (I should note I am not in the US.) I also feel that recognition of classic autism seems to be lost behind the media circus over HFA/Asperger’s at times. What a change in just a few years! As for support funding, I don’t think lumping multiple conditions together serves anyone well as even with asd and adhd there are so many variations. I’ve no ideas on how governments should decide who gets funding but I think in conditions like Asperger’s and ADHD you can’t lump them altogether, either, because some suffer more disability than others. Btw, I have one asd child and one who has traits. Both have other issues that probably cause more difficulty than their asd traits (although if my asd child doesn’t stop talking soon, I might change my mind:) )
I will also add that I really like CBW and think your blog is great.
I think I’m spending too much time with acronyms lately. 😦
December 6, 2008 at 2:22 pm
Dee
Just found your blog and only had time to skim the comments, but I felt the need to comment.
Yes, everyone claims to have whatever the new thing is, but that doesn’t mean the new whatever isn’t real.
I have two sons. One diagnosed with ADHD, and one with a form of dyslexia. I’ve spent years fighting with doctors, teachers, principals, etc, etc. I finally just decided to homeschool them. One “expert” recently told me my younger son would be in “special education” if he’d stayed in the system. Right now he’s testing right off the charts. I can see they both have similar problems, but the problems show up in different ways.
I blame the medical community for wanting to micro-label everything.
It’s all processing problems: ADD, ADHD, Autism, Bi-polar, Asperger’s, and on and on. It’s the brain’s ability, or lack thereof, to process things in a certain way. The schools and society want things to be “in a certain way” and that is that.
February 26, 2009 at 10:04 pm
JimJ
Regarding the concerns that “autism spectrum” may spread the resources too thin … I think it may have been just the opposite. By grouping the problems, you get a group large enough that it seems like a problem for society instead of just for some unlucky families.
Obama’s new budget ( http://www.whitehouse.gov/omb/budget/ ) calls out $211million for Autism Spectrum Disorders. From a quick skim, the only other diseases to get special notice were cancer and AIDS.