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Autism/Really need help 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 wanted to also get the view of someone who is on the spectrum as you may be able to add a unique perspective and might be able to provide more helpful advice.

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 Sam

Answer
Hi there, Sam!

First thing's first: I can pretty much assure you that this isn't going to lose her services. The fact of the matter is that, unless I misunderstand what you are saying here, and I don't think I am: what it is actually indicating is that she may need more services, or at the very least different ones. Basically, I am not a professional, as I have said many times. But what it sounds like here is that, simply put, she is not as high-functioning as her language skills make her seem to be. Her frustration is not that she resents being high-functioning as such. Her frustration is that because of her excellent language skills, people think that she is higher-functioning on all levels than she is.

This isn't a matter of body integrity disorder. As a matter of fact, this is the matter of someone being completely aware of what she is capable of... and the rest of the world being unable to process that. The art of being able to speak the English language and comprehend it is not the same as being able to *communicate* in it.

Her comparison of a broken leg was one, but let me see if I can come up with the way I'm seeing it. Imagine, for a moment, that you are an expert dancer. You have learned dancing steps for 40 years. You are a master at being able to move your body in every way possible. Now, try to imagine that you have been transplanted to a quiet country commune where, instead of speaking, these people say everything through interpretive dance, because they thought that because you are a master, you will quickly learn the language. You can move exactly the way they do. You can go through the motions of every dance that they teach you. And yet, you have, for those whole 40 years, communicated through speaking. You think in words and sentences, and not in dance. So every time they ask you something, you want to speak to them, rather than dance. You might be able to go through the steps, but that is not how your brain is wired to communicate.

Does it feel strange, trying to imagine having to communicate through nothing but dancing? You may ask me, 'Why should I be trying to imagine dancing, when they are people, and can speak just like I can?' That is exactly the way that your family member is trying to see things. However, because she was a master of learning to speak the language, everyone assumes that her mind works exactly like the 'normal mind'. Everyone thinks that she can communicate perfectly because she learned to speak the way they did.

You're concerned over how 'weird' this seems. When I first read this question, I jokingly wanted to ask, '.... Mom?' That is because this question reads almost like an attempt to explain to others why *I* often have trouble with communication. People read how well I type, and they don't realize that verbally, I don't have the same skills. And socially and in certain types of communication, it can be even harder. This is, from what I have been able to gather, actually a common issue with high-functioning ASDs.

You ask what you can do. To me, I see two things that will be a huge help here. And the first one comes from you: understanding. You've already taken a huge step by trying to do that, and I hope that the explanation will help some with that. Trying to recognize the reason for meltdowns and work around them is a big thing.

The second one needs to come from her worker: adaptation or education. The fact of the matter is that, just because one learns the motions of communication, it can't fix all problems. However, by not letting the worker know what the problems *are*, they can't try and fix, or at least work around, what is there. if she hasn't brought the issue up with the worker, then you may want to try and explain to her that it may be something she should try to bring up. I know that it is very difficult to get her to open up, but in a case like this, it is way more effective if she does the opening herself, not to mention the fact that it helps keep trust.

I can only hope that my long and spammy thoughts had some help in the situation, and that you were able to get assistance from them, and/or from others that the question was asked to. As always, questions, comments, feedback, follow-ups, are welcome!

Trey  

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Trey McGowan

Expertise

My primary expertise is in the area of the social, psychological, and mental development of Aspergers Syndrome and other high-functioning Autistic Spectrum Disorders. I am also very knowledgeable in the communication disorders and common co-existing issues. I'm well-read on most of these as well as having experienced it myself. Other aspects of autism, I can do fairly well at as well, from the oversensitivity to the recognition of it.

Warning: I am *not* a medical professional, and while I can research answers through books and online, I can not give direct medical expertise.

Experience

I am diagnosed Asperger's/ASD since 1993, and have been reading up and studying it, as well as taking 'first hand accounts' for most of those years. In addition, I have had three children, adopted elsewhere, all of whom are varying degrees of autistic from mid to high functioning. My mother has done some research on the subject as well, and passed some of it on to me.

Education/Credentials
I have completed grade school and most of high school, and achieved a GED. I've also received home schooling.

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