Too High-Pitched to Hear
May 4, 2008 by Kristina Chew, PhD
Filed under Health
It was a couple of months ago that my son Charlie started—for the first time in his life—to show sensitivity to sound by putting both hands over his ears. We’ve known autistic children and adults who’ve found the sound of merry-go-round music, clapping, sirens, and much more unbearable, but never (we thought) Charlie. And then the ear-covering thing started and it’s as if a whole new world of sounds and frequencies and pitches has become evident to us.
I took Charlie to hear a production of Cabaret at the college where I teach; Charlie lasted for almost the entire first act, but kept his hands over his ears for almost all of it and cringed when the drums played. It’s human voices—-especially high-pitched ones (including mine sometimes)—that seem especially to bother Charlie, and also dogs barking and, again, especially in a high-pitched tone.
So I wasn’t surprised to read that the Mosquito—-a black box that emits a high-decibel pulsing noise several times a second over a 15-mile radius—has been having “serious effects” on autistic individuals. The Mosquito is being used by a number of retailers in the UK to keep teenagers from loitering around, on the grounds that only those 25 years and younger can hear it. As reported in today’s Guardian, the Co-op has said that it will cease use of the devices and instead play Mozart and Barry Manilow music to (it is hoped) keep away the teenagers.
‘As a teenager I was always going to hear it,’ said Paul Brookfield, 19. ‘But as I had autism it was heightened. It was a high-pitched whizzing, whirring. I’ve heard of cases involving some people with autism who can’t go anywhere near a store because it actually makes them sick.’
The Co-op’s decision to abandon using the Mosquito device has been welcomed by the National Autistic Society (NAS). ‘We are extremely concerned about the possible harmful effects of such devices for people with autism,’ said a spokeswoman for the society.
‘The NAS helpline has received calls from people who have been adversely affected by the Mosquito system and who are worried by the distress it may cause to people with the condition. Many people with autism have very sensitive hearing and may become alarmed and anxious if a high-pitched tone or buzz is suddenly used in their vicinity.’
So we’ll see if sonatas and the Copacabana can keep the likes of these guys away.
As for Charlie and his sound sensitivity, he has been doing less of the hands over ears in the past two weeks (but, if this study about bats emitting more decibels than a rock concert, we’ll be staying away from them). Though the other day at the pool he was swimming in the deep end with one hand over his right ear—-yes, and staying easily afloat!
Alex has always been sensitive to noises. He can hear someone mowing their lawn a mile away (I know because we got in the car and drove until we found them!) I bought some ear muffs and that helps a lot. It made our trip to Disney World last year, or he wouldn’t have been able to tolerate anything there.
One tough one is the sound of bugs, he hates that, and we live in Maine, bugs galore! Black fly season is upon us and he hates the sound they make, as well as the mosquitoes. I have had to make a huge effort to use everything available to get rid of bugs around our house and backyard, or he won’t go outside during the summer. He hears the bugs and thinks they are going to sting or bite him, it terrifies him. So we have a Mosquito Magnet, citronella lamps everywhere, dunks into the swamp behind the house, sprays/fogs, you name it, just so he will go outside.
I’ve always been very sensitive to noises, although in my old age now sounds don’t bother me as much as they did when I was a kid and teenager. I rarely ever went shopping, my mother couldn’t drag me, as I couldn’t handle the sounds, especially the high pitched ones no one else could hear. I was told once it was their security systems. I have finally found peace in rural Maine in the last 11 years and I just don’t hear as well as I used to, which can be a blessing!
Alex goes through phases, and is more sensitive at times to noises. He is doing so well right now, and is so motivated, that he has been able to stand in the middle of the kids for the music programs on stage without his aide and he sings and does the hand motions! He also has gone and enjoyed some of the Kinderkonzerts where the symphony emphasizes certain types of instruments, and he loves them! Even the one on brass! Alex was humming Mozart and others when he was 1 year old, so I shouldn’t be surprised! He couldn’t talk, but he hummed the full symphonies!
I hope Charlie’s hearing sensitivity improves! Until then, ear plugs and ear muffs!
Kristina,
A good book by Olga Bogdashina on sensory sensitivities is “Sensory Perceptual Issues in Autism and Asperger Syndrome: Different Sensory Experiences, Different Perceptual Worlds”. It discusses each of the senses in depth and discusses the hypo or hypersensitivity of each, as well as how it can fluctuate. She also references many adult autistics experiences and the medical literature on it. I learned a lot from this book.
Karen
Fascinating . . . Tom too has just developed an intolerance to the sound of bugs and a morbid fear of being bitten. He had hysterics in the car a couple of weeks ago because of a gnat–do gnats even make noise???–but he could see the bug ipso facto . . . His dad has always had supersensitive hearing (although he too no longer hears as well as he once did
).
Thanks for the bug tips–I have a feeling they’ll come in handy come summer!
I’m laughing at the replacement! Amigo likes classical music and has such electic taste he would probably Barry Manilow, too.
A year or so ago, Nik used to have awful, hysterical reactions to the sorts of background noises the average person might take for granted. The whirring, humming of the HVAC system at his school’s pool (combined w/the echo effect) used to make him so upset he would vomit. He used to scream at the sound of soprano singers (which really stunk b/c I am a singer!).
We’ve been working with his OT on his sensory issues and have seen some pretty remarkable progress. Nik now smiles and claps when he hears singing (whew!) and the noises that once bothered him don’t seem to any more. Every once in a while though, if he has had a particularly challenging day/time, Nik will be hypersensitive to some of the same things that he now seems to love.
I don’t think Charlie would like sopranos either, sorry—-something about the female voice. (Maybe something about all those female voices from teachers, therapists, and me over the years telling Charlie to do this or that!—one of his original therapists had a high, girlish voice and I think he remembers that.)
Bug noises have not seemed to bother Charlie but we’ll see—btw, the bugs usually go for me and I, consequently, can’t stand the sound of mosquitos.
Storkdok, thanks for the book suggestion!
A fifteen mile radius? Overkill, much? If it just made that noise around the door that’d be more than enough to keep away all the kids and autistics their little hearts desired, without making life totally unbearable.
Wonder how much they wanted customers……
Kristina,
Have you looked into the auditory training piece. The story by Annabelle Stehli (The Sound of A Miracle) prompted us to try it.
I can never say with full emphasis that the training (we did it in Montreal) was the reason our son began to speak, but following that 2 week series and a hospital stay with a gastro parasite, he began to speak.
Given that it is a benign procedure, it’s worth a try.
xRobin
I highly doubt the whole “15 mile radius” thing. It would have to be awfully loud to do that, especially with all the other noise we have.
Still, I am sure that they are locally obnoxious.
Joe
I just put the book by Olga on my wish list at Amazon. I am contemplating getting amazon kindle as that would eliminate all these books in my living room and bedroom. The bookcase broke the other day, good thing matt was not home or it could have landed on him.
Don
Don’t high-pitched sounds attenuate rather quickly? So a 15-mile radius is rather impossible.
I KNEW MY BOYS WEREN’T STUPID
Anna set up a special school for her own autistic children
By Sadie Dodds
IN desperation, Anna Kennedy remortgaged the family home to set up a school for her two autistic sons when teachers said they couldn’t be taught…
Anna Kennedy has to pinch herself when she surveys the 100 staff and 86 pupils at Hillingdon Manor school in North London. For she is not just the school manager and mother of two of its pupils, she was the brains behind creating the place.
The parents of two autistic sons, Anna, 47, and husband Sean, 45, a barrister, were at their wits’ end some years ago after their children were rejected from 26 mainstream schools. Unwilling to send them to “institutionalised special schools”, they remortgaged their house and talked Hillingdon Council into granting them the lease on a derelict former school.
“My son Patrick, who’s now 18, was four when he was diagnosed with Asperger’s syndrome – a condition similar to autism which means that although he is intelligent he has difficulty communicating,” says Anna.
“He suffers from a lack of empathy, impaired imagination and finds it hard making friends. But he doesn’t have the speech and language delay that comes with full-blown autism. I wanted him to have a proper education that came as close to mainstream schooling as possible.”
Her younger son Angelo, now 15, has far more complex problems. As a toddler he was diagnosed with autism, a brain disorder that impairs his ability to relate, communicate and interact.
“When the boys were diagnosed, I sat in the consultant’s room thinking, ‘Oh no, both my boys have autism, what have I done wrong?’ But you can’t blame yourself,” says Anna.
Five years ago Sean was also diagnosed with Asperger’s.
“We began to suspect it because some of his quirks were similar to Patrick’s,” explains Anna. “Living with a husband who has Asperger’s hasn’t ever been a big deal – I’d assumed his constant thirst for knowledge and structure was part of his personality. That’s the man I fell in love with and his symptoms don’t affect our day-to-day lives.”
The couple are very philosophical about the likelihood the boys inherited disorders from their father. “There isn’t anything we could have done about it. Research into the chromosome that may cause it to be inherited is, as yet, inconclusive,” says Anna.
“I’d dreamed of idyllic days on the beach and picnics in the park but autism snuffed out all those aspirations.
“Angelo is locked into his autism. You can’t have a conversation with him and he has no sense of danger. He doesn’t sleep either, which was terrible when he was young.
I’d spend my nights with him as he ran up and down his room letting out high-pitched screams. I was exhausted
Anna struggled to find a school that would accept her children.
“Patrick went to a mainstream infants’ school for 18 months. Every day he screamed and shouted when we got to the school gates,” Anna recalls.
“I had to endure pitying looks from other parents as I sat with him in the school corridor until he’d calmed down. It was very distressing and eventually the headmistress told me, ‘We can’t cope with Patrick any more’.
Anna lets off steam by tap dancing
“Meanwhile Angelo had been going to nursery and was getting one-to-one support but when it was time to go to school nobody could meet his tutoring needs.”
For three years Anna had both boys at home while she and Sean went through the soul-destroying process of approaching 26 schools in a 10-mile radius and being rejected by every one.
“Patrick and Angelo were having five hours of tuition at home,” says Anna. “I remember Angelo’s first tutor sitting on the carpet and crying after a few days. She’d never dealt with a severely autistic child before.”
In 1997, Sean and Anna turned their garage into a classroom to create a more school-like environment. Then they set up a support group, Hillingdon Autistic Care and Support.
“It’s such a lonely condition that we needed to share our experiences with parents of other autistic kids. We started with six members but now have 275 families.
“During that time I met Alex who had a grown-up son with Asperger’s. He felt his son had never had the schooling he’d needed and it planted an idea in my mind: if there wasn’t a school out there that was right for my boys, then I’d just have to create one.”
Having found the derelict school building nearby Anna, Sean, Alex and other friends presented a case to the local authority for saving it from demolition as a school for autistic children. They won a unanimous decision from the councillors: they could have a 30-year lease on the building if they carried out refurbishments estimated at £637,000.
“We remortgaged our house and Sean took redundancy from his job as an IT manager at Thames Water,” says Anna.
“In fact we did the work for a fraction of that cost. Among the parents of other autistic children were plumbers, carpenters and decorators. In September 1999, after 18 months of hard graft, Hillingdon Manor School opened.
“There were 19 children including Patrick and Angelo and we’d recruited teachers by advertising in the Times Educational Supplement. Each child had what’s called a statement of special educational needs, which meant they had funding from the local authority.”
Nine years on, Hillingdon Manor has 86 pupils aged three to 19 and the school is a centre of excellence. Anna has also helped set up the Old Vicarage Residence where autistic adults can live, plus West London Community College for 18 adults with autism and Summacare outreach support agency to help families with respite carers.
“Recently, three of our pupils achieved 21 GCSEs between them, which is terrific,” she adds proudly. “There is a ratio of one teacher to every eight pupils and the principal specialises in autism, educational psychology, speech and language therapy.
“We follow the national curriculum but tailor it to each child’s needs and also include lessons in movement and relaxation since autistic kids struggle with both. We even put some through the Duke of Edinburgh award scheme.
“Patrick has grown into a strapping young man who would like to study drama at mainstream college when he’s 19. He socialises with his friends like any normal 18-year-old and I can see him getting married one day and having a career and a family.”
Though Angelo has improved he’ll always need one-to-one care, says Anna. “Eventually I’d like him to go into supervised living so that he can experience a degree of independence, but I’ll want him close to us.”
While throwing herself into creating a better life for her sons and others like them – and writing a book, Not Stupid, on the subject – has Anna ever had any time just for her?
“Because Sean also has Asperger’s, I sometimes feel very lonely as he, Patrick and Angelo can be so locked into their own worlds,” she sighs.
“I let off steam by tap dancing on Thursdays but I haven’t had a glass of wine in years as I always need to be alert because Angelo is so erratic. We haven’t had a holiday since a disastrous trip to Disneyland Paris years ago. Angelo went walkabout and it took four hours to find him.
“Somehow, though, we’ve managed to have a reasonable life in our own way. Sean and I never used to go out but in the last year my mother-in-law and the children’s aunt have babysat so we could go to the theatre, which was a revelation I hope we’ll repeat soon.”
** Not Stupid by Anna Kennedy (John Blake publishing) available Amazon waterstones etc
There is an effective way to reproduce the sound of the Mosquito: go into a sound recording program such as Audacity and set the tone to 16500 KHz. That’s pretty much what it sounds like.
The noise of the Mosquito went quite a way – I had difficulty using my local bank across the road due to the noise!
As the person quoted in the article I await developments with interest.
Has anyone here tried autidory training? I am curious….sometimes our hopes create miracles..
xR
A friend whose son had a lot of sound sensitivity did auditory integration for some time—-I don’t think he is so sensitive to noises any more.
Interesting….seems like auditory training is more benign than medical marijuana for autism(as mentioned in the latest Autism Research Institute news)….anyway, just how do they regulate whether or not the marijuana is laced with hallucinogens? Wouldn’t that be just the kicker…inciting another kind of riot!