misdiagnosis of the deaf

[Steinhauer]

This subject was brought up in another thread, and I thought perhaps it should have a thread of its own. I came across this article, and I am wondering if there is any validity to it:

Deafness Mistaken for Mental Retardation - When Deaf People Were Mislabeled as Retarded

Most deaf people in my generation - but not all - escaped a fate that would have ruined any chance they would have had of a normal life. That is, we were not misdiagnosed as retarded. For a long time, up until about the 1970s, deaf people were sometimes misdiagnosed as having mental retardation, with severe consequences. These unfortunate deaf people grew up in institutions - homes for the retarded or mentally ill - without access to language. By the time they were discovered to be only deaf, not retarded, it was often too late for them to salvage what was left of their lives. All the money won in lawsuits could not bring back lost childhoods nor give them the language skills needed to survive in society.

The reason I am reading all this is because there is currently a federal lawsuit in my state regarding this very thing:

State sued for failing to provide mental health services for the deaf *| ajc.com

“How would you ever be able to be able to diagnose someone if you couldn’t communicate with them?” attorney Lee Parks said to The Atlanta Journal-Constitution. “It’s a good example of a hole in the public health matrix that is heart rending."

Another reason why this is on my mind is because I remember a deaf friend of mine whose own mother thought he was retarded. She sent him off to a school for people with down syndrome. I remember him signing to me how frustrated he was with his mother's decision to do this and how powerless he felt to do anything about it. His parents never learned sign communication.

How many folks here experienced similar situations?

 

[shel90]

My brother was labeled as having behavior problems but it was due to lack of communication when he was in the oral program. Luckily, he was put in a Deaf school at the age of 5 and had full access to language. All the tantrums went away within months.

 

[rockin'robin]

Years ago, my own sister told me that almost all deaf people were mentally retarded also.....I'll never forget her words!
She also told my other siblings that "we all will have to take care of her now, she is deaf". I went thru a lot of shyt before I struck out "on my own" and made her "eat her words." Finished school, took some college courses, had a very good paying job for 30 years.
Basically, she's eating her words now! Not even a HS education, waitressing/factory jobs, etc. I was the only 1 out of 6 that had a reasonable education and a high-paying job....and they all were Hearing, I was the only deafie.

 

[shel90]

Years ago, my own sister told me that almost all deaf people were mentally retarded also.....I'll never forget her words!
She also told my other siblings that "we all will have to take care of her now, she is deaf". I went thru a lot of shyt before I struck out "on my own" and made her "eat her words." Finished school, took some college courses, had a very good paying job for 30 years.
Basically, she's eating her words now! Not even a HS education, waitressing/factory jobs, etc. I was the only 1 out of 6 that had a reasonable education and a high-paying job....and they all were Hearing, I was the only deafie.

One of my deaf friends posted on his FB status about him being an elite athlete. He said this...

"Yes, some of us, deaf people, can perform 100% better than most hearing people but as deaf athletes, we have to put in 200% effort to prove ourselves."

Very powerful words and that was all from his thinking...

 

[rockin'robin]

Agree....Sometimes when it seems the cards are stacked against us, it can give us the motivation and drive to succeed. Seems I was always having to "prove" myself...but not anymore. I go by the philosophy "Sticks and stones can break my bones, but words will never hurt me".

 

[shel90]

Agree....Sometimes when it seems the cards are stacked against us, it can give us the motivation and drive to succeed. Seems I was always having to "prove" myself...but not anymore. I go by the philosophy "Sticks and stones can break my bones, but words will never hurt me".

He is an elite althete meaning he wants to go farther than the average althete so in order for him to do that, he has to put in 200% due to the discrimination and misconception about us, deaf people, out there.

 

[sheila022]

One of my deaf friends posted on his FB status about him being an elite athlete. He said this...

"Yes, some of us, deaf people, can perform 100% better than most hearing people but as deaf athletes, we have to put in 200% effort to prove ourselves."

Very powerful words and that was all from his thinking...

story of my life!!!!!!!!!!!!!!!!!!!!

 

[somedeafdudefromPNW]

Mmm...

Got a story relating to this, but it didn't concern deafness.

 

[ASLGAL]

My brother was labeled as having behavior problems but it was due to lack of communication when he was in the oral program. Luckily, he was put in a Deaf school at the age of 5 and had full access to language. All the tantrums went away within months.

I still believe this misdiagnosis has happened to my 3 year old grand-daughter and I do not seem to be able to make anyone listen.

She has been accepted to a pre-school program for developmentally delayed children. It is primarily oral although the teacher does sign. She does not speak, we understand her verbalizing, although she is trying since starting this program and she does sign. Because of my husbands HOH we sign. We have been told we should not, which I know is ridiculous. She does get very frustrated, I know tantrums!

I am happy this thread opened up. I do not believe they accurately assessed her hearing but none of the professionals seem to care.

 

[GrendelQ]

I still believe this misdiagnosis has happened to my 3 year old grand-daughter and I do not seem to be able to make anyone listen.

She has been accepted to a pre-school program for developmentally delayed children. It is primarily oral although the teacher does sign. She does not speak, we understand her verbalizing, although she is trying since starting this program and she does sign. Because of my husbands HOH we sign. We have been told we should not, which I know is ridiculous. She does get very frustrated, I know tantrums!

I am happy this thread opened up. I do not believe they accurately assessed her hearing but none of the professionals seem to care.

The only times (2) my daughter had tantrums were during periods where her communication skills were lacking, before she fully developed age appropriate ASL skills and spoken language and I am certain it was directly related. I don't know your situation, obviously, but seems like that frustration of not being able to say/sign /understand has got to be something terrible to a little one. I don't know who told you not to sign, but WHY on earth would they do that ??? Your grand daughter needs more communication, not less. Regarding the mis-assessment, do you think she's more severely HOH or less?

 

[deafgal001]

I believe her parents did. Parents do that. They sometimes take professional's advices too far.. Like if the professional tell the parents to have her practice spoken language more often at home, the parents took it as NO SIGNING, even put a barrier from family members who sign. Worst if when a school threatened to tell these kids to go to a different school because they are not speaking (the school will start to believe it is not a good replacement for children who use ASL) and parents don't want that to happen.

 

[green427]

story of my life!!!!!!!!!!!!!!!!!!!!

Mine too.

Although, I must say people today are a little bit better than they were back in the '80's due to ASL being "cool" to know these days :roll:

I try my best to keep a level head, but deep down inside, I have this tremendous resentment for hearing people.

 

[ASLGAL]

The only times (2) my daughter had tantrums were during periods where her communication skills were lacking, before she fully developed age appropriate ASL skills and spoken language and I am certain it was directly related. I don't know your situation, obviously, but seems like that frustration of not being able to say/sign /understand has got to be something terrible to a little one. I don't know who told you not to sign, but WHY on earth would they do that ??? Your grand daughter needs more communication, not less. Regarding the mis-assessment, do you think she's more severely HOH or less?

I believe she is HOH. I am not sure what the level might be. She is very bright but gets very frustrated with everyone and everything because no one understands the sounds she creates. It is better but the way she enunciates, I believe is a huge clue that is being missed.
When she seemed to stop normal progression and reverted it was an easy diagnosis to say "she is delayed, work with Help Me Grow and then get her into a pre-school program", in my not so humble opinion.
She mixes sign and sounds. No, her parents did not say stop signing, several so-called professionals and the well meaning family member types. I actually had one family member insinuate that we had caused this by confusing her by signing to her. As far as the people who feel the right to criticize...we still get the "Stop that you are rude" when my husband and I are signing in public (usually a place with too much background and even the Hearing Aids contribute to the issue)

 

[Steinhauer]

I believe she is HOH. I am not sure what the level might be. She is very bright but gets very frustrated with everyone and everything because no one understands the sounds she creates. It is better but the way she enunciates, I believe is a huge clue that is being missed.
When she seemed to stop normal progression and reverted it was an easy diagnosis to say "she is delayed, work with Help Me Grow and then get her into a pre-school program", in my not so humble opinion.
She mixes sign and sounds. No, her parents did not say stop signing, several so-called professionals and the well meaning family member types. I actually had one family member insinuate that we had caused this by confusing her by signing to her. As far as the people who feel the right to criticize...we still get the "Stop that you are rude" when my husband and I are signing in public (usually a place with too much background and even the Hearing Aids contribute to the issue)

Do you mind me asking what your grand daughter was diagnosed with?

 

[deafdyke]

b

elieve she is HOH. I am not sure what the level might be. She is very bright but gets very frustrated with everyone and everything because no one understands the sounds she creates. It is better but the way she enunciates, I believe is a huge clue that is being missed.
When she seemed to stop normal progression and reverted it was an easy diagnosis to say "she is delayed, work with Help Me Grow and then get her into a pre-school program", in my not so humble opinion.
She mixes sign and sounds. No, her parents did not say stop signing, several so-called professionals and the well meaning family member types.

Are the parents openminded? Are they also in Ohio? You may want to suggest that they take her to St. Rita's School for the Deaf for an evalution.
So she's bright but has severe spoken language issues? It's possible she's not actually delayed or autistic, but rather may have severe apraxia, which is a significent spoken language disorder. St. Rita's has an apraxia program for hearing students who use ASL as a first language due to speech/spoken language issues.

 

[deafdyke]

Oh, and back in the 70's before audilogy improved, a lot of Hoh kids were misdx as being intellectucally disabled.
There is a very good book about a severely hoh woman being put into a home for intllectucaly disabled kids. " I was #87"

 

[Bebonang]

Even though I was born deaf, I was misdiagnosed by the doctor as autistic. I have no memory of what sounds was like until I got my first hearing aid (1) at the age of 9 years old. I don't know how professionals could make a mistake that they had the wrong diagnose like me. They did not give me the tests on anything other than hearing loss.

The funny thing I remembered that my mom send me to the Catholic school (not remembered what state I was in, but felt it was in Michigan ) and I do remembered that I was looking around the room and also looked out the windows daydreaming, never heard the nun or the children around me. So after only one day, the nun teacher took my hand and went to my mom's house and told my mom (she told me years later about it) that I could not attend the Catholic school as I was not paying attention in the classroom. That is where I finally went to Minnesota to live in the bush and then finally went to Minneapolis, Minnesota for me to get tests from the doctor at the University of Minnesota Hospital to diagnose that I was deaf at 8 1/2 years old. I also don't remember having speech at all before that time. I must have communicate with home signs with family members.

 

[whatdidyousay!]

When I was little kid people told my older sister I was retarded and not to bring me over to their house when she came to play their kids. The parents did not want me around their kids , I guess they thought I was going to harm their kids!

 

[KristinaB]

When I was 3, my parents wanted to find out why I wasn't talking. They took me to a psychologist who was a friend of my father's. He labeled me as being mentally challenged and borderline brain damaged. Told my parents that they needed to separate me from my brothers so it would get to them. My parents sent my brothers to my grandparents (From Arkansas to Indiana) for a summer. I was talking, but not clearly by the end of the summer. Brother's came home, and father took me to a different psychologist. is comment was that my brothers may have thought I would be screeching or crying again, so they gave me whatever they thought I wanted and by doing that, I didn't use speech. Without my brother's there, I was forced to use speech. With my mother's help, my speech improved.

 

[ASLGAL]

Do you mind me asking what your grand daughter was diagnosed with?

I was not happy with the Children's Hospital in our area. They really did not pinpoint anything.

Are the parents openminded? Are they also in Ohio? You may want to suggest that they take her to St. Rita's School for the Deaf for an evalution.
So she's bright but has severe spoken language issues? It's possible she's not actually delayed or autistic, but rather may have severe apraxia, which is a significent spoken language disorder. St. Rita's has an apraxia program for hearing students who use ASL as a first language due to speech/spoken language issues.

Thank you for the suggestion. I did not know St. Rita's had such a program. I will check into it. I suppose I thought a child had to have a hearing loss diagnosis to attend St. Rita's

The Children's hospital evaluators mentioned both apraxia and aphasia, which did not make sense to me because they are opposite ends of the spectrum (my limited knowledge) and never once was using ASL as a first language stated, just to have her work with Help Me Grow, get speech and physical therapy, and enter her into a pre-school program when she turned 3. If anything, the fact that Randy and I sign with her seems to be frowned upon by the so-called experts.