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Severe hearing loss/autism: How to treat?

Kate Johnston Kate at ricochet.net
Tue Sep 2 15:13:26 EST 1997

As a person with severe hearing loss who is also the mother of an 
autistic son, I had to jump into this fascinating discussion.  As I have 
personal knowledge of both hearing loss and autism, I am positive that 
your best bet of finding ways of working with these combined conditions 
is going to be from people knowledgeable about autism.  It's not going 
to be easy, and you're going to have to search long and hard for the 
right person, but there ARE people out there who can help!  

I wasn't able to get much help from audiologists, for the most part, 
when I was searching for answers about my own son, although I do believe  
there are a few of them out there who can help.  It might be useful to 
find an audiologist who is willing to team up with someone knowledgeable 
in autism, such as a behavioral specialist, to ensure your son gets the 
best help possible.

I understand what you mean by the problems inherent in trying to treat 
the conditions separately.  Neither the autism nor the hearing loss is 
going to go away at any time, and definitely not during diagnosis nor 
treatment.  And in fact, it is going to be difficult to distinguish one 
from the other.

Some autistic people do have problems with certain frequencies.  I don't 
necessarily believe this is true of ALL persons with autism, although 
there are many proponents of this.

Good luck with the ABR.  My own son had one at 2 1/2 years, and I NEVER 
want to put either him or his father or myself through that experience 
again!  It did have the benefit of validating mine and my husband's 
beliefs that our son did not have a hearing loss.

You don't say whether your autistic son is a child or not.  I had some 
correspondence with an audiologist I met on the Internet (and who I 
think is still subscribed to this newsgroup) who told me there are  
different approaches to ABR for a child.  He also had this to add:

"A better approach would be to use Distortion Product Otoacoustic 
Emissions (DPOAE).  This tests the integrity of the cochlea's outer hair 
cells *without sedating the child*.  If they fail the DPOAE, then a 
sedated diagnostic ABR may con firm, but dot define the problem.  If 
there appears to be a sensorineural loss, then conventional behavioral 
audiometry should be startedto better define the loss."

After I'd raised the question (after my son had "failed" a conventional 
hearing test in a soundproof booth), of how does one know a child has 
failed a hearing test because of an actual lack of hearing or because he 
simply does not know how to pay attention, this audiologist said to me:

"Separating attention form lack of sensation is tough, especially with 
autism. DPOAE will allow us to get a much better estimate of hearing 
much sooner."

Good luck!  I will be happy to talk more if you want.

Kate Johnston
kate at ricochet.net
Sunnyvale, California

zepolv wrote:
> I appreciate your response and also your suggestion to post to the
> bit.listserv.autism newsgroup, but I have already posted there on
> several occasions and have not had a response -- probably because, as
> you say, the combined conditions or diagnoses are not that commonly
> found.  There would be a problem, however, in implementing your
> suggestion that the conditions be treated separately, since both
> conditions are present in the same person.  The autism is not going to
> step aside while the hearing loss is being addressed, and neither is the
> hearing loss going to take a back seat when addressing the autism.  A
> full consideration and understanding of the combination of conditions is
> necessary for successful treatment.
> A nonverbal person who is autistic and developmentally disabled does not
> have the ability to communicate the many problems that might develop
> with a hearing aid such as lack of comfort, the presence of undesirable
> noises, sounds, etc. I have also heard that hearing aids must be
> calibrated differently for use in autistic people since some levels of
> sound can actually be painful or extremely agitating.  Is this true?  If
> so, what exactly must be done?  It is also quite possible that he won't
> have the tolerance level necessary to wear a hearing aid, but we're
> certainly willing to give it a try.
> Several medical diagnostic procedures under general anesthesia are
> scheduled for week after next and will include a repeat ABR.  Ear molds
> will be made at the same time.  Are there tests other than ABR which
> would give more information?  What are the best methods of evaluating
> the degree and type of hearing loss in someone who previously had normal
> hearing?  Are there additional areas of expertise desirable in the
> audiologist who will be doing the testing in a person with so many
> special needs and lacks the ability to communicate?
> I recognize that responses are given with good intentions at helping
> with an unusual situation, and I appreciate the time taken to respond.
> I look forward to any comments and/or suggestions that may help my son
> to hear again.  Please send cc: of posting to NoDxJustRx at aol.com.
> Thanks.

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