Autism/A complex issue

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Hello I am not sure if you are going to be able to answer my questions, as this is a really complex case. I have a loved one (family member) with high functioning (moderate to high functioning) autism that i advocate for and help care for at times. She is in her mid 20s now and over the last year she has been presenting with an unusual issue I can only equate to survivors guilt on some form or Body integrity disorder.

First a brief history (you will likely need it) as a child she was moderately delayed in her expressive, descriptive and receptive speech she also had poor gross and fine motor skills, resistance to certain changes, restricted interest(to the point her sibling have since baned certain movies and the like from their home to this day) hyper active, unable to read body language, poor eye contact and little to no apparent interest in friends.  She received intensive early intervention, speech, play and occupational therapies she was in special Ed classes more most of her school life too.  She needed and still does need a highly structured enviormaent she also had pretty bad meltdowns  she also had sensory issues

Today she is in college, engaged (he has ADHD and is 2 years younger and still developmentally ahead of her)  she can't drive still as I said needs a lot of routine and structure only really interacts with her fiancé  and is still living at home. She also uses a service dog. Still has restricted interests, her verbal iq is in the 99th percentile too. But she also has many self care deficits and could not live on her own. Her interest are also typical below age level. She still can't read body language and her communications are normally around her specific interest.

Now for the current issue I am writting you about

She hates her self for being Verbal and i think to some extent for being high functioning.  I am not sure the origins of this issue though I have some supiceouns.    It took her sometime to talk to me about it and to be able to explain it to me  it took many months of conversation with her to get out what she meant and try to give me an example.

She started by se paying the images in her brain were fading away being replaced with words and the more she used the words the less she thought in pictures and she wanted it to stop. This was very clearly distressing her to the point of tears. So we began engaging her in activities that required more visual thinking (note she also has visual special issues ) then she began to say she hated herself for being able to talk. That she regretted ever learning to talk. A few times she became very upset and said and through tears said that she didn't get why should should have to be verbal, what was the point? Yes she could form complex ideas and sentences but she can't tell you we're she saw the keys in the house or how to get to a store. ( she seems to stil be delayed in her descriptive language. She struggles with giving directions and always gets up to give you the item your looking for if you ask her to just tell you she gets really upset and sometimes will yell "I cant"  Another thing she mentioned that I have observed is she can't see to process visual stimulus a speak at the same time. She has said as much to " when I walk and talk my eyes see the path but my brain does not" She later explained she didn't feel right being verbal but she has been verbal for so long now it is both a part of her an not. I asked her to give me an example and after a lot of thinking she came up with one I could get she said  being verbal is like a prosthetic leg. She said "imagine you were born with out a leg just one leg. you learn to understand and interact with the world with only one leg. then when your 5 or 6  they get you a prosthetic leg. Over the years you learn to use and even master it better then anyone expects, but inside you still know it really isn't part of you  this is how words are for me"

Do you have any idea what might be going on? Do you have any advice? What can I do to help her? It tears me up because of how much it is hurting her. She has had moderately severe meltdowns over it too. Could there be something else causing this? I just don't know what to do or how to help her. We are at a complete loss. I hope it is ok I'm asking a few other experts too I really need answers.

I consider end having her bring it up with her therapist or a doctor but she has a lot of trouble self advocating and you have to be really close to her to get what I did. I also worry she might lose services over it too.
Thank you for your Time
-Sam

Answer
Hi Sam

Interesting issue.

There is no doubt that individuals with autism display all sorts of odd behaviors, thoughts, and ideas that seem ridiculous to those of us who do not have autism. But to them, it is a very real and disturbing concern.

Ultimately, she must discuss this with her therapist. But unless you are her guardian, I don't think you can interfere in her treatment. The best thing that you can do is sit with her and ask her to discuss it with her therapist. Perhaps, they can come up with a plan on how she can learn to live with her "prosthetic" verbal skills. No doubt she must learn ways that she can be able to process so much stimuli coming into her at once. It must be very distressing. I think it would be the equivalent of having many people talking to us at one time. Also, people with autism have difficulty focusing on one set of stimuli while ignoring the rest. She would benefit a great deal from attention and focusing exercises as well to help her do this.

I'd be happy to talk to her as well. But I do charge for consultations and as a student, this may be difficult for her to afford. But I am available, if she wants to work on some attention and focusing exercises to help her attend to verbal and auditory stimuli when it is coming at her.  

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Valerie Herskowitz

Expertise

I am an autism expert and speech pathologist (for over 30 years). I am also the parent of a child with autism. I can answer any question on autism dealing with communication, education, behavior and diet. I cannot answer questions that are medical in nature or are dealing with medications.

Experience

I have ran a therapy center for individuals with autism until 2008. I lecture all over the country. I am a writer on the subject of autism. I also teach classes on autism on line to students and other speech pathologists.

Organizations
President-elect: Florida Association of Speech-Language Pathologists and Audiologists Member American Speech and Hearing Association, MembernAutism Society of America, President of the National Autism Registry, Vice President of the Association for Developmentally Disabled Adults and Adolescents.

Publications
I am the author of: Always Leave Them Laughing: The Future of Our Children with Developmental Disabilities Must Be Addressed Available from Amazon: http://www.amazon.com/Always-Leave-Them-Laughing-ebook/dp/B008MAGIWE Available from Smashwords: http://www.smashwords.com/books/view/181423 Autism and Computers: Maximizing Independence Through Technology Available from Amazon:http://www.amazon.com/Autism-Computers-Maximizing-Independence-Technology/dp/1438981155 Contributor to: Cutting Edges in Autism Therapy 2010, 2011, 2012 Autism Society of America's national publication (September 2008). Advance Magazine, South Florida Parenting, Spectrum Magazine,

Education/Credentials
I have a masters degree in speech pathology

Awards and Honors
I won a Stevie Award in 2004: Lifetime Achievement Award for my work with individuals with autism. My therapy center won, Judge's Choice Award Best Center in South Florida by South Florida Parenting magazine 2005.

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