Posts Tagged ‘autism’

Autism or Hearing Difference? Tweezing out the Differences

May 4, 2018

By: Kristi Riley

IMG_20180401_123932

One of the big questions researchers have in the D/HH and autism world is, how do you tell the difference between hearing loss symptoms and autism symptoms? As a mom of a child with a severe hearing difference and a child with both mild autism and a mild hearing difference, I have gotten to see first hand what some of these differences may look like. I am in the process of earning my doctorate degree in clinical audiology at the University of Wisconsin-Madison. I am also a family trainee in the Wisconsin LEND Program (Leadership Education in Neurodevelopmental and Related Disabilities) at the Waisman Center, where I have learned about different developmental disabilities in children. I was recently trained through LEND on how to administer the ADOS. I have friends who are D/HH and friends who are on the autism spectrum. I can tell you for certainty that narrowing down the symptoms of hearing loss and the symptoms of autism is no walk in the park, and requires the subjective feedback from both parents who know the child best and the objective analysis of trained professionals.

IMG_20180401_124804

In 2012 when my daughter Lauralee was born, she failed her newborn hearing screening. Right away, we were whisked into bimonthly audiology appointments. Being music teachers at the time, my husband, Justin, and I were concerned not only about her ability to enjoy music, but her ability to gain access to language and literacy. If you can’t hear, you can’t speak. If you can’t speak, you can’t read. If you can’t read, then just about every subject that crosses your path is affected. (Who cares about aspirations of Julliard!) Learning to talk, read, then write affects every single subject in school. Lauralee was not officially diagnosed until 6 months old. She did not get her first pair of hearing aids until she was 11 months old. We were worried about her language development.

Lauralee has always been very alert and interactive. She has always made good eye contact and loved to play. She is goofy and is such a joy to be around. Even though she did gain the stereotypical “mama and dada” babble in the first few months, she mostly talked with her facial expressions. I decided to get the Signing Time DVDs, and she and I soaked-up sign language. It was like we had our own “secret language”. I always felt like we had a deep connection. Sometimes, I seriously questioned whether she was truly deaf or if it was all a big mistake!

IMG_20180401_124100

In 2014 (right after I started my path to audiology), we had our son, Oliver. He was such a beautiful baby and I was ecstatic to find out he passed his newborn hearing screening. Even though he had a short NICU stay after he was born, he ultimately seemed healthy in every way. When we brought him home, right away I noticed he was a little different from Lauralee. He was fussier and cried a lot. I chalked it up to being a different personality. Besides, I was a fussy kid too! I’ll never forget, at around 7 weeks, I was holding Oliver in my lap attempting to do face time. He would not look at me nor smile. He seemed so disconnected. I would force my face into his gaze until I got a reaction. But ultimately, I did not connect with him like Lauralee. I felt guilty.

When Oliver was about 3 or 4 months old I started subbing at a local daycare. Oliver stayed in the infant room while Lauralee was in the 2-year-old room. Lauralee was immediately the “favorite friend”. Kids would follow her around because she was so expressive and out-going. She caught-up academically and knew all her letters and sounds by the time she was 3. Oliver, on the other hand, was making minimal progress. He had little ticks like “twinkle hands” when he was curious, leg tensing and screaming when he was excited, and head shaking when he was bored. He did not learn to sit until he was over 10 months old.

When Oliver was around 12 months old, I contacted birth-to-3 about my concerns. He started receiving OT services right away. Weeks went by and Oliver did not learn to walk. He resisted every idea the therapist had. One night while crying my eyes out, my husband told me about this place called the Wisconsin Early Autism Project. I doubted autism because Oliver was gaining language and had okay eye contact but I went along with the idea just in case…

Two summers ago, I realized Oliver was saying “what?” a lot. Sometimes he would ignore me all together. He had not yet started autism therapy, and I wondered if it was his hearing. On a last ditch effort to prove it was NOT autism but something else, I asked my professor if we could test him. She agreed.

Testing day was a nightmare and an absolute embarrassment. Oliver screamed bloody murder in the sound booth and was ultimately untrainable. We waited six months and got a few frequencies. We waited another couple of months and got a few more frequencies- my professor is amazing! Ultimately, it looked like Oliver DID have a mild hearing loss in one ear (which newborn screenings do not catch). (YESSS!) We confirmed objectively through ABR over the summer. Even though he had a mild loss, my professor made the point that the loss would not affect his language development nor his behavior. The autism diagnosis stuck. (Darn.)

IMG_20180330_150408

I have finally come to terms with Oliver’s diagnosis. I don’t know why it took me so long. Maybe because there is a stigma about autism or a stigma about children with “poor behavior”. Lauralee made me feel like an amazing mom. Oliver challenges me every step of the way. Looking back, there’s no doubt Oliver has the right diagnosis. And to tell you the truth, he’s a good little boy.

Both autism disorder and hearing disorders are a spectrum. Every case is different. Someone could have the exact same audiogram as Lauralee but be affected more. There is so many intricate connections between the peripheral hearing system and the cortical synapses in the brain where hearing and cognition happen that something could go haywire at any point along the auditory pathway. Some one could have mild autism like Oliver but have a completely different set of abilities or behaviors affecting everyday life. Because of all these factors, it’s hard to truly come up with a set of “symptoms” that separate autism and hearing differences.

Maybe rather than separating the disabilities as two separate entities, maybe hearing loss is a symptom of autism. Autism on a basic level is caused by sensory wiring differences in the brain. There have been several studies showing the autistic auditory pathway is wired differently from the neuro-typical pathway. Perhaps hearing differences, whether peripheral or cortical, are a common symptom of autism. But the social insufficiencies that are commonly associated with autism do not translate to a person with deafness.

People who are deaf but given adequate language access through sign or otherwise, develop socially normal. Yes, a person may have to grab their attention differently but ultimately a deaf person is very socially aware. Autism can make a person seem “deaf” because they lack social cues like eye-contact and quick verbal responses. Neuro-typical people with deafness do not lack these social differences when given the chance to communicate. You can see it clearly in my children, but we are only one example on the entire spectrum.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Sara Lundquist: Finding Where You Belong

February 4, 2015

pic of chad and I

 

 

Last weekend my husband and I hosted a couple friends for dinner and an evening at our house.  The wife in this couple is deaf and her husband is a sign language interpreter.  As we sat down at the table to eat an ease fell over me.  There was no need to feel like I needed to fake understanding with nods or smiles.  I have a moderate severe hearing loss and I usually feel anxious before a meeting like this one.  That night was wonderful we had something in common, lack of hearing and knowledge of lack of hearing.

We need to find where we belong.  We need to find a community or a group where we all get each other.  If that group is about sports, animals, children, or in this case hearing loss.  Having a group or even a few individuals that understand is a comforting thing.  It doesn’t turn into an embarrassment when you ask for something to be repeated or reworded.  You don’t get the dreaded “never mind.”

I grew up in Minnesota in the metro area.  I was a child with an ear infection every other day it seemed.  Ear tubes put my ears more times than I care to count.  I know I grew up with a hearing loss now that I think back on my childhood.  I never understood how people could understand a whisper.  Someone putting their mouth to my ear was just hot air I could feel.  Was that how everyone experienced this?  Being at a friend’s house and having them all talk at once or talk with music playing, none of this I could understand.  I wondered why this seemed so easy for other people.  Why did whispering between girlfriends seem fun not an anxiety filled moment.  As I grew up and went to college (majored in Communicative Disorders) I realized more and more that yes I had a hearing loss. I just had to get to the point of acceptance.

The past couple years I have come out of my shell and embraced hearing loss as best I could.  Hearing aids were purchased.  My secret was out.  I joined a couple groups that deal with hearing loss and being hard of hearing.  I started to put my feelings on to paper or a computer in today’s vernacular.  I started my blog Musings of a Momma. I started this blog as a stress reliever–writing in the evenings.  When my hearing took another dive down, I decided to write more and focus more on being a hard of hearing mom.  My writing got notice by the HearStrong Foundation where I was named a HearStrong Champion.  This has to be one of my proudest days behind the birth of my children.

sara lundquist

 

One thing I wanted for my children was to make sure their hearing is on track.  I remembering taking my daughter to an audiologist and she tested around a -10db across the board.  I guess she is hearing fine!  My son came along five years later.  He didn’t babble much or start talking till three years old.  I had some people telling me autism and some telling me he couldn’t hear.  We pursued both paths with him.  He was found to be on the autism spectrum high functioning.  When we went forward on his hearing we found out he had a mild conductive hearing loss.  We continue to have his hearing checked every six months.  It has dropped at times and we have done tubes, and adenoids and tonsils out.  I just took him to the audiologist last week and his hearing has dropped another 10db.  We are off to the doctor this week to see if something medically can be done.  He has had no ear infections or fluid in his ears so I am stumped.  Then we head back to the audiologist.  Just a wait and see with him.  He does use the FM system at school where he is in 1st grade.

IMG_1063

A great resource we were told about was MN Hands and Voices.  Our family attended a family event last spring.  Our whole drive my husband and I wondered if we would fit in, our son only has a mild loss.  What we found was open arms of acceptance and a wealth of information.  We learned a mild loss is a loss and it does affect a child at school.  We had some IEP questions answered and found some new friends in the process.  It was like the dinner we had last weekend we found that place we belonged.  We found a place that understands our questions, doesn’t get annoyed with the What?? If you didn’t hear something right away, they got it.  I want my son to know there is a place that we belong and people that understand.  MN hands and voices has been that place for our family with our son this past year.

 

Sara B Lundquist

www.ausomemomma.wordpress.com

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail