Changing All the Time
December 21, 2008 by Kristina Chew, PhD
Filed under Health
When Charlie was first diagnosed and for many years after, sounds loud or soft, low or high, did not seem to bother him. He was certainly drawn to music but didn’t seem particularly bothered by sirens, loud merry-go-round music, shouts, fire drills. Every time we had to fill out a checklist, or talk to a new teacher or OT, we always shrugged “no, no” about “any sound sensitivities.”
Fast forward to about two years ago, when a motorcycle shot past the black car and suddenly I heard a knocking sound: Charlie knocking his head on the back of the seat and crying.
That was a pretty obvious sign of something about Charlie’s sensitivity to sound. I began to drive with the windows shut (and, on hot days, with the AC fully on). Littly by little, it became apparent that a number of sounds—everything mentioned above—indeed bothered Charlie, who signalled this by sometimes crying out or placing both hands oer his ears.
But was he always seeking to block out sounds? I’d turn on a Barney video on YouTube as Charlie requested, only to see him watching from at least a foot away, hands over ears. Could he not simply be seeking to block out the sounds, but to filter them, screen out some aspects of them?, and to listen better?
We tend to equate hands over the ears with a wish to shut out some sounds when Charlie might be attempting to do precisely the opposite, to listen and hear better.
Just as: Nodding one’s head says “yes” here in the US, but it says “no” in other cultures. Same gesture, very different meanings.
It’s really been about two years that Charlie has seemed so much more sound sensitive and Jim and I think that what might be going on is that Charlie is much more alert and attuned to what’s going on around him, and therefore more in need of filtering out all that stimuli from the world. He’s listening better than ever, that is, and trying to figure out a way to best make sense of it all.
Yesterday, he sat by the side of the swimming pool for 40 minutes: We were at an event we’ve often been to, a swimming hour just for autistic children with numerous friendly high school students volunteering. Desite kindly coaxing from three different kids and Jim and me, Charlie refused to budge until the very end, when he waded in the shallow end and swam slowly to the deep end. Just as he got there, it was announced that it was time to get out. Charlie remained in the pool as it emptied out and the lifeguards replaced the plastic ropes for the lanes, and the very water and air quieted. He stayed there, floating and swimming a bit, in the deep end and middle of the pool, for some 40 more minutes.
Once upon a time, nothing could keep Charlie from jumping (or trying to jump) into a pool as soon as he saw it. Now he likes to think about it and take in what’s going all. No toddler in a tall boy’s body, he’s quite aware of what’s going on; he’s changing all the time.
One of the things that I am fascinated with at the moment is the lightning quick changes that I see going on with my kids as they hit adolescence/puberty…at times that it seems that I’ve got 3 new children every week. My one daughter has always been extremely noise-sensitive, but for the first time this year we were able to take her to my parents’ church (they have a very large pipe organ), and actually have her not spend the entire service crawled under the pew. Now she’ll put on a pair of headphones and sit through almost anything.
It’s also fascinating to watch their individual personalities changing and forming more and more each day- even though we’ve been experiencing a few more ups and downs over the past months, you can really start to see exactly what kind of adults they are going to become.
I’ve thought a lot about the “meaning” of hands-over-ears, which is a very characteristic gesture for Bud. He is certainly sensitive to sound, but I have come to see that particular gesture as an indicator that Bud is feeling tentative about something that he sees as unpredictable or something he’s not certain about. So, regardless of noise level, sometimes if Bud is in a new environment, meeting a new person, or watching a new video for the first time, his hands fly to his ears. I’ve wondered if, for him, it’s like watching a scary movie through your fingers – you know that if you NEED to cover your eyes, you’ll be able to do it quickly.
I’ve also wondered if it has less to do with sound and more to do with some kind of soothing sensory input. Bud rarely has his hands covering his ears completely – instead, he seems to be applying gentle pressure just in front of his ear. Could it be some kind of homegrown accupressure? I just don’t know.
@ But was he always seeking to block out sounds?
There are so many interesting points to which I could respond, but this one is special. I’m very glad you raised this idea, Kristina. It’s a peephole through which one can go to examine a much larger issue: How often our immediate interpretations of others’ actions may be faulty.
Of course, once we’ve assigned a meaning to an event (or behavior), we begin to see evidence of it regularly and interpret each instance as stronger evidence of our hypothesis (confirmatory bias: “I wouldn’t have seen it if I hadn’t believed it”).
It behooves us to consider alternative interpretations. Ideally, in the manner of a functional behavior assessment, we should test those alternatives and come away with a much more refined understanding of the “meaning” of the behavior.
Kristina, it’s fascinating to “hear” about Charlie’s hearing! Tom, like his dad, has unusually acute hearing. (Tom’s dad at one point thought he was losing his hearing–he worked as an audio engineer and live sound-reinforcement specialist in his twenties–but a battery of tests showed his hearing at 55 is better than normal. The doctor conjectured that he is “losing” some of his higher and lower frequency capacities, but he’s far from going deaf–still, for him it’s a similar experience as he simply doesn’t hear as well as he used to!)
Young Tom has always had trouble regulating input of all kinds, but sounds weren’t always the toughest, although they can be now (He’ll be 7 in January.) The sight of a balloon being blown up will send him running for cover: the popping noise–a problem for most little kids–is totally unnerving for him. Fire drills are a nightmare–noise confounded by sudden upheaval in routine!Yet he enjoys sound effects in movies and games, and likes live and recorded music as well. (It’s the organ that gets him into church on Sundays.) If his ears get clogged he goes into a frenzy; hats are tough for him but earmuffs or earphones–forget it. And, when he finally did accede to a hearing test his responses were “backwards” that is, he’d say he couldn’t hear when he actually could.
I saw the same behavior in my son. Loud noises hurt. When our children were young and one of his siblings would cry, David would go nuts. Alarms, pops, vacuum cleaners, lawn mowers other children made him miserable. The hands over the ears were a common theme. My son’s hearing was tested and it measured about 20 dB more sensitive than normal.
With the caveats that one autistic is not the same as another and that I can only speak from my experience with David, I would say that the hands over the ears mean exactly what you think they mean. It is too loud.
I can vouch for evolution.
Not only in my own life — major changes this year — but also in Adam. Just look at the painting he did this year on my new Joy of Autism blog at http://www.esteeklar.com. As well, he is typing completely without support now. And he only started in February.
And he’s talking more.
And he has friends who want to be with him. He is interactive without facilitation.
Big changes…big….huge.
If only we could measure such a thing. Bratty reacted to hand dryers, clothes dryers and the air conditioning plant in a major shopping centre which is right beside the family parking. But she likes songs, tv, the car radio and her computer LOUD!
Her brother is easier to negotiate with on volume but will happily play two or three forms of noise at once; the TV with a video, a portable DVD player and his computer.
whereas I cannot even stand to talk on the phone if there is ANY ambient noise in the room, most particularly someone trying to tell me something while I am on the phone. Cannot stand it when Mr Hammie plays something on Youtube while the t.v is on, makes me really irritable.
On your swimming story, I am looking forward to christmas day when I will take Bratty for a swim at our Health and Leisure Club. It is in a 4 star hotel so must stay open for guests on christmas day and we had the entire pool to ourselves last year. magic. (they also make Mammy a cup of tea to have beside the pool)
And I especially love hill walking when it snows, the silence it creates as it muffles all the sounds.
Speaking of which; we got new headphones recently that are suppose to block out 75% of ambient noise; the ear bud kind. cant wait to try them out. (Jivo brand, got em for free in a goodie bag)
May be very useful during the next tantrum….
xx
.You might be surprised to learn how many record collectors and audiophiles are “on the spectrum”. With this comes the ability to tell what pressing of a certain record,or being able to identify what kind of tube,cartridge,whatever you are listening to,without knowing ahead of time.
Thirteen is just about the right age for this ability to kick in.
Our kids definitely have their own agenda, whether it be when they are going to swim, and when they are going to develop!
L covers his ears a lot, but it isn’t because he is trying to block out sound. Rather, he does it to change the pitch of the sound. He will stand right next to the speakers, crank the volume up, then cover his ears and listen, occasionally removing and recovering his ears, big smiles the whole time. Same with the TV, hair dryer, etc.
Loud noises also don’t really bother my guys, but then they are used to them. We live one house away from the Fire Station and EMS. Which also is the location for our town tornado siren!! That one makes ME cringe when it goes off. And the train tracks are just down the block.
They don’t even wake up at night for the sirens. Handy.
@Roger, records? Jim has a full collection in the basement. Hmmm……..
@Estée, Always lovely to hear of Adam’s progress. I’ve been following your new site—-good things ahead, yes?
@Jen,
have yet to see Charlie near a pipe organ—played a bit of Jimi Hendrix for him today and he smiled and covered his ears. (it was Voodoo Chile)
@Ed, funny thing is that, while Charlie holds his hands over his ears while the vacuum is on, he is apparently very fond of vacuuming at school. Have never been able to test his hearing to that extent…….
@TomsMom,
don’t get me started on fire drills! Charlie’s teacher asks to know when they will happen and she gets her students prepared.
@John Lloyd,
it’s been a long lesson in learning that one must always consider alternate interpretations—what one might think “right” can be so “wrong.”
@lisadom,
4 star hotel? Now, we could all use that! — just went for the most luscious walk in new falling snow with Charlie last week. You would not believe how sensitive the hand dryers are in the bathrooms of our YMCA—I almost jump when they go on!
@Rebecca, you’ve given me an insight about pitch……
@bonnie,
how our boys surprise us!
@mom-nos,
“homegrown accupressure”—-I do wonder. I have also noted Charlie just pulling and pushing at his ear lobes, as if he’s trying to “adjust” the sound. But I think he and Bud are on the same, ahem, wavelength, as far as the hands over ears gesture——plus Charlie often is doing this with 2 hoods on—–
The apparent paradoxes around intolerance of some sounds produced by others, yet happy *production* of similar sounds at sometimes great intensity, has to do with control. If I control the generation of a stimulus, I am cognitively prepared for it. I expect it. In many cases I even know I can titrate it or shut it off. Conversely, if the sound is generated by some agency external to me, I *don’t* have that kind of control, and it is much harder to establish the cognitive preparation that will allow me to tolerate it.
In short, there is no paradox.
This is *so* similar to the difference between *good* physical therapy subsequent to a bone fracture or other injury in which motion produces pain, and *bad* physical therapy. It’s all about giving the *patient* control of titrating the physical challenge to the healing body-subsystem. That control allows the patient to use the pain feedback intelligently and incrementally push the envelope of what can be tolerated. If the patient doesn’t feel secure in the knowledge that s/he can engage the healing body-subsystem incrementally and not be pushed beyond the threshold of tolerance in a manner not under his/her control, fear and excessive risk-aversion will enter into the picture as critical negative psychological factors.
Why can’t we (get our professionals to) learn to think the same way about autistic people’s sensory profiles?
>> he’s changing all the time.
Don’t they though.
Noises as triggers have ebbed and flowed with G. Last school year was a big step where he learned, over several months, to be tolerant enough of off-key singing that he was able at the end of the year sing with his classmates through most of his Kindergarten graduation ceremony. He only took one break with us in he audience and didn’t even have to leave the room.
But if he’s been in a period of stress, like when he was starting the new school, he will use the ear covering in response to a peak in stress even in cases where there is no particularly offensive sound. I’ve surmised one or more parts of a learned response, “I can’t hear you so your words don’t count”, and making himself a bit of impromptu safe, lower sensory space.
About the pool and water, one thing G has started doing is, after more than a year of wanting to take showers (identifying with us and his big brother) returning to wanting to take baths. He’ll lay in the tub with his ears in the water for long periods of time, till water’s gone cold, been reheated, gone cold again, and the big meanie that I am pull the plug on the drain. I mention this because the sounds you hear underwater are going to be somewhat muffled and lower frequency a bit like having your hands over your ears. I wonder if that wasn’t something that Charlie was enjoying while floating in the pool?
@Kristina,
David remembers his sound sensitivity. He still has ultra sensitive hearing, but the loud sounds don’t make him cringe like they did before. He had a love/hate relationship with noise. He loved to flush the toilets at home and hated to flush some of the toilets at school because they were too loud. The first time we took him to watch the Fourth of July fireworks (we didn’t know any better) I ran with him back to the car and closed all of the windows even though the car was sweltering. Later he would throw poppers on the ground while covering his ears with his shoulder and his other hand. He hated the lawnmower and the vacuum yet the toy lawn mower and the toy vacuum were his favorite toys. I can ask him about this dichotomy but I am not sure he can explain it.
@Ed: this doesn’t sound like a dichotomy at all! As I said above: it’s all a question of what *control* he has over the extent to which the sensations impact him. And it sounds like he’s trying some ways to push the envelope on his own tolerance in that regard. Both kinds of response — seeking to establish control, and pushing the envelope once control is in possession — deserve high praise and encouragement! This is what learning how to navigate the world as a more capable *yet nevertheless autistic* individual is all about…
Phil has got it nailed down, exactly.
I read that sound sensitivity is linked to magnesium deficiency. Look up “hyperacusis and magnesium”. Certainly autistic kids are deficient in many things, possibly due to poor absorption.
“Homegrown acupressure” – loud sounds cause physical pain – he is trying to relieve the pain.
> He hated the lawnmower and the vacuum yet the toy lawn mower and the toy vacuum were his favorite toys. I can ask him about this dichotomy but I am not sure he can explain it.
Simple – the real things are too loud, the toy ones are not.
The variable hearing sensitivity may be explained by fluctuating levels of magnesium.
If you prefer therapy, auditory integration therapy has been known to reduce hyperacusis. There are many other therapies available as well. Do seek out treatments instead of tossing around theories about why your child covers his ears.
When we gave our son magnesium, there was an immediate increase in self-injurious behaviors; many of those supplements did not have a good effect on him. It’s been interesting to see my son learn to accommodate for his needs.
@Tyler, off-key singing (mine) bothers Charlie too and I do think he likes the muffled sounds under water. No interest in taking a bath but some really long hot showers!
It’s also interesting to me just how differently our kids react not only to supplements, but to medications. One of my children has done extremely well on Melatonin for sleep problems, where it sends another child into what’s pretty much a clinically manic phase. Now we’re finding that after a couple of years the daughter that has taken melatonin well is responding much better to chamomile for sleep problems, while it makes another of my children vomit (I know- vomiting from chamomile?)
I was a pretty educated herbalist for years (which I used on myself and other adults, NOT on children), and I think that it’s extremely important that if you want to try new supplements (of any kind) on your child, it should be done under a doctor’s supervision (preferably a doctor who does not sell that supplement). There is a huge percentage of people out there who seem to think that vitamins, supplements, and herbs or herbal extracts are not medicines or can’t do any harm because “they’re natural”, but although some of them are effective, some of them can be injurious to the child if you don’t know exactly what you are doing. It’s rarely a good idea to google something and then say “I’ll try it” without adequate medical supervision- best case scenario it’s not going to do anything bad, worst case scenario you’re going to buy something that can actively make your child sick, or actually set back their progress. Doctors who are selling supplements themselves are rarely a good resource, in my experience.
I simply have to comment about this one. Several public restrooms have extremely loud toilet flushes. I sure it varies between restrooms. (ever take notice?) My son has to hold me tightly after he pushes the handle so it doesn’t bother him as much when it flushes. This has been a issue when we have to use the restrooms when out in public. Don’t even talk about fire drills!
Phil, dkmnow,
I had always thought of it as a fascination, never as a way of learning to deal with the world.
Heheh, toilet flushing, how I hate it. Used to press the button and run out of the bathroom as quickly as possible, usually not quick enough, sometimes the haste made me not press the button deep enough and I’d have to go back (argh). Actually the sort of high-pitched sound of the water in the tank refilling is even worse for me than the roar of the flush.
I am an autistic adult. I was born with classic autism (head banging type
child) because of this I know about families wrapping themselves around a
disability. Stroke, like autism is a family affair. I am also a bit of a
savant, my gift understanding the human body.
4 years ago, a doctor asked me if I would apply my skills to a patient of
his, Dick Clark who was reaching the six month point in his recovery. You
can read the rest of the story from the cover story Stroke Connection
Magazine. I work everyday with stroke survivors. My disability is my gift
and my compassion comes from my own dealing with the rest of the world
around the disabled individual.
Here is a youtube video of what I do.
http://www.youtube.com/watch?v=Yb90Uyy_VuI