Question
My son has Asperger's syndrome and is sensitive and has a meltdown if I talk or anyone else talks to loudly, because he said he doesn't like loud voices or yelling. He is 22 and can't hold down a job. His social worker raises her voice often when talking to him. He said he requested for her to talk more calmly to him because the conversations repeat in his head for hours if she talks to loud or says something in a tone that could be taken the wrong way if interpreted literally. She refused. Is that wrong? Should someone respect his wishes and talk more calmly if they know he has Asperger's and it causes him so much anxiety and hours of conversation analysis and repeating and he told them so, especially to someone like a social worker? Thanks.
Answer
You may want to consider educating your son's social worker about hyperacusis, which is a disorder characterized by oversensitivity to certain frequency ranges of sound. An individual with severe hyperacusis has trouble tolerating everyday sounds, most of which might seem unpleasantly noisy to that particular individual but not to other people. The disorder is often chronic and usually accompanied by tinnitus (i.e., ringing in the ears), but can occur in people who have little or no measurable hearing loss.
Hyperacusis can come on suddenly or gradually. It can initially affect only one ear, but generally, within a short time, the condition is almost always bilateral. It can be mild or severe. Hyperacusis is more common in children with:
• attention deficit disorder (ADD)
• autism and autistic-like behaviors
• central auditory processing disorder
• head injury
• learning disabilities
It may be developed due to injury sustained to the inner ear. There is conjecture that the efferent part (i.e., fibers that originate in the brain which serve to regulate sounds) associated with the auditory nerve (i.e., olivocochlear bundle) has been impacted. This particular theory shows that the efferent fibers from the auditory nerve are uniquely damaged, while the hair cells that permit the hearing of pure tones in an audiometric evaluation stay intact.
In cases not involving aural injury to the inner ear, hyperacusis may also be developed due to injury to the brain or the neurological system. In these instances, hyperacusis can be explained as a cerebral processing problem specific to how the brain interprets sound. In extraordinary instances, hyperacusis might be the result of a vestibular disorder. This kind of hyperacusis, called vestibular hyperacusis, is brought on by the brain perceiving particular sounds as motion input in addition to auditory input. 40% of tinnitus sufferers complain of mild hyperacusis.
A crying baby, a car with screechy brakes, turning newspaper pages, running water in the kitchen sink, a child placing dishes and silverware on the table – all are intolerable to the ears of someone with hyperacusis.
Causes-
The most typical reason for hyperacusis is over-exposure to exorbitant decibel levels (or sound pressure levels). Many people get hyperacusis abruptly by way of:
• firing a gun
• having an airbag deploy in their car
• experiencing any extremely loud sound
• head injury
• Lyme disease
• Ménière's disease
• surgery
• taking ear sensitizing drugs
• TMD (Temporomandibular joint disorder)
Others are born with sound sensitivity (Superior Canal Dehiscence Syndrome), or have experienced a history of ear infections, or come from a family that has had hearing difficulties.
Causes include, but are not restricted to:
• A vestibular disorder
• Adverse drug reaction
• Asperger syndrome
• Autism
• Bell's palsy
• Chronic ear infections
• Ear irrigation
• Facial nerve dysfunction
• MAO inhibitor discontinuation syndrome
• Ménière's disease
• Migraine
• Minor head injury
• Severe head trauma
• Superior canal dehiscence syndrome (SCDS)
• Surgery
• Tay-Sachs Disease
• Temporomandibular joint disorder (TMJ)
• Tension Myositis Syndrome
• Williams Syndrome
Symptoms-
In cochlear hyperacusis (the most common form of hyperacusis), the symptoms are ear discomfort, irritation, and general intolerance to any sounds that most individuals don't notice or consider uncomfortable. Crying spells or anxiety attacks might derive from cochlear hyperacusis. Up to 86% of hyperacusis sufferers also have tinnitus.
In vestibular hyperacusis, the sufferer may experience feelings of lightheadedness, nausea or vomiting, or perhaps a lack of balance when sounds of certain pitches are present (e.g., they may feel like they are falling, and as a result, involuntarily grimace and clutch for something to brace themselves with). The degree to which a sufferer is impacted is dependent not only on the overall severity of the person's signs and symptoms, but additionally on whether the individual can identify sounds in that frequency range at the volume in question, and also on the individual's pre-existing muscle tone and severity of startle response.
Anxiety, stress, and/or phonophobia might be present in both kinds of hyperacusis. Somebody with either type of hyperacusis might adopt avoidant behavior in order to stay away from any nerve-racking sound situations or to prevent embarrassing themselves in a social situation that may include painful sounds.
An individual struggling with hyperacusis may be shocked by really low sound levels. Daily sounds may hurt his/her ears, for example:
• chewing gum
• cooking
• dishes
• eating
• normal conversation
• ringing phones
• running water
• shutting doors
• television
• ticking clocks
The person who has hyperacusis can't simply get up and walk away from noise. Instead, the volume on the whole world seems stuck on high. In the worst case scenario, even the use of earplugs does not provide comfort, and the individual might spend his life attempting to avoid all noises and merely stay home.
Treatment-
Steroids are used to treat hyperacusis within 72 hours of the onset of the condition.
The most typical treatment for hyperacusis is retraining therapy, which uses broadband noise. Tinnitus Retraining Therapy (TRT), a treatment originally used to treat tinnitus, uses broadband noise to treat hyperacusis.
Pink noise may also be used to treat hyperacusis. By listening to broadband noise at soft levels for a disciplined period of time each day, patients can rebuild their tolerances to sound.
When looking for treatment, it is important that the doctor determine the patient's Loudness Discomfort Levels (LDL) so that hearing tests (brainstem auditory evoke response) or other diagnostic tests which involve loud noise (MRI) do not worsen the patient's tolerance to sound.
Hyperacusis makes living in this noisy world difficult and dramatically changes a person's life-style. Moving about, traveling, and communicating with others is challenging. Ear protection must be worn in areas that seem too loud. This includes earplugs, industrial earmuffs, or both if necessary.
Individuals who suspect they may have hyperacusis should seek an evaluation by an otolaryngologist (i.e., an ear, nose, and throat doctor). The initial consultation is likely to include a full audiologic evaluation (with a hearing test), a recording of medical history, and a medical evaluation by a physician. Counseling about evaluation findings and treatment options may also be provided at that time.
More resources for parents of children and teens with Asperger's and High-Functioning Autism:
COMMENTS:
• Anonymous said… My daughter has just been diagnosed with Hyperacusis. It took years of me begging for help. Apparently it is very common with Asperges . It sounds like your son could have this and there is help. I would ask your doctor for a referral to your local hearing hospital.
• Anonymous said… autistic people get over looked for jobs all the time. Oh here's an idea, and I have said this before, many times to my son and others. There is a desperate need for there to be more autistic people working in the system with autistic people! Even Professor Tony Attwood thinks it would be great if there was a service provided by autistic people for autistic people. Shame the government can't have some common sense and legislate such a thing, would solve both issues. After all, people can read all they like about something, they will never know exactly how it feels, unless they actualy experiance it. This social worker sounds like exactly the kind of person who should not be doing that kind of job. Selfish, disrespectful, ignorent, and uncaring. Ask for a different one and refuse to allow this one any where near your son. If he has said he does not like her raising her voice, and explained why, she should respect that, not simpley disregard his wishes. Sorry you and your son have to deal with this.
• Anonymous said… Good for him for being able to explain and ask for what he needs! I'd definitely ask for another worker, she clearly doesn't "get" him...
• Anonymous said… He can wear light ear plugs that allow him to hear at a lower tone. Some kids wear them to church because of the music and singing.
• Anonymous said… Hey folks.....there is still such a thing as common courtesy (I think)! If ANYONE asks you to "tone it down"....do it! How rude! And unprofessional! And obnoxious! And crass!
• Anonymous said… I hate when ppl do this to my son! It's like your voice is hurting my son's ears and tone it down already! But then they point out he talks very loudly all the time. But I ask we'll can you hear your own voice when your all alone..... Does it sound normal,high or low? They don't know or can't say, okay well the same goes for him. He can't tell if his voice is high or low, because he has sensory processing disorder and hears everything at the same level and that dial is stuck on loud. And when ppl whisper he only gets partial words or words sound different then they should, or hat sounds like Cat. So he has to work even harder to make sense of what's being sad to him. Sensory issues are a huge deal for our kids and myself included, but ppl are tend to take my word for it because I'm a adult/mom with Aspergers then if a child with Aspergers is struggling with the sensory world and saying that certain things are affecting him.
• Anonymous said… I would talk to a supervisor and get switched to a different social worker.
• Anonymous said… It's insane that someone wouldn't abide by the simple wish. My grandson is the same and his teachers just don't get it. Also, strangely enough, it sets him off to be whispered to. Has anyone else heard of this??
• Anonymous said… She should not be yelling. Go above her and speak to a supervisor. Your son should be treated with respect.
• Anonymous said… The ADA states he can "ask for an interpreter" and that's not limited to foreign languages! Time to let the Social Worker know she is in violation of the ADA! Put it in writing what has happen before, how the sw responds, why he needs to have an interpreter, what he expects the interpreter will do and how it will help him - be very clear. Next, send the social worker, her supervisor and the area/district supervisor a copy of the request letter, with a signed receipt from the post office so you can prove they got a copy. Good Luck!
• Anonymous said… There are hearing aids that work by modulating noise that could help. Hearing aid providers almost always offer a free exam.
• Anonymous said… There shouldn't be any need for a social worker to raise their voice to him at all. I would request someone else.
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