A very complex situation I really need help!

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 or 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 saying 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 spacial 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 about them misinterpreting it and giving her some diagnosis that isn't right or will hurt her, or they will try to drug her to solve the issue and she doesn't respond we'll to medication at all.

I think it's just how she tells it. She feels she is a person with a type of inner language that is not word based. She feels this is her true nature. Language has made her start forgetting her native language. I can see how that is distressing. Imagine you move from your English spoken culture into a different one, you learn their language, and your own starts to fade, your sense of connection to what you feel is home starts to fade. You would feel distressed. There are no good options. Either be a stranger to your surroundings or compromise with who you are deep down.

I agree with what Jimrat said. Also, sometimes people assume verbal = not autistic, and a lot of misunderstandings can come out of that. People will think that "you can't have problems because you can speak" and will not see the struggles beneath. Executive functioning, motor planning, expressive language, all of that is difficult when you have autism - let alone combining other issues like ADHD and depression too. But someone who isn't aware of the real cause will just blame it on lazyness or not trying hard enough, which can make the person feel like crap and start to doubt themselves or hate themselves. It's understandable.

I can't give much advice but I can just say keep on being an advocate for her. Keep being there as support, love and care. It's very devastating to not have someone like that around, someone who doesn't support you or understand, or even try to understand.

Totally agree!

Hi, I think you are already doing a marvelous job and have listened very carefully. She also has done exceedingly well in communicating her issues to you.

I too think in pictures and have also experienced some, minor, distress when noticing that words have taken over some areas of thought that were once occupied by pictures. One possible cause for the transition is my need to communicate verbally in my employment. I need to take pictorial memories of items and geographic locations and convey them, along with instructions, in a very precise manner using radio communication. I am very attached to my ability to think in three dimensional geometric space and the high level clarity in which I can do this. To have this clouded, or crowded, by words is distressing. These pictorial thoughts are like friends.

What might help is to provide an oasis of pictorial thought. The kind that can't easily be substituted with words. Some examples for me are to plan or design things, physical things. I might lie in bed planning how I'm going to install a garden bed, the plants required, orientation to the sun, reticulation requirements and exactly what components and fittings are required. I might think about all my tools that I require and the colour schemes and how the finished product might look. I think you get the idea. Solving problems is good too. I might have a broken fitting on my cast iron BBQ burner. Cast iron is difficult to weld and I don't have the necessary welding equipment, it also has other challenging properties different to normal steel. So how am I going to fix this object in a durable and safe manner. So try finding some tasks that are appropriate to her interests that require a high level of pictorial thought. Provide her with a comfortable environment free of distraction to do this.

A final comment. We had a 20yr old Japanese girl staying with us for two weeks. She was studying teaching and worked at our sons' school. She had learned English since age 14 but never used it to talk to English speaking people. Now she was emersed in an English speaking culture and had no option but to converse in English. I remember asking about this and how she was coping. She said that it made her very tied and her brain felt overloaded. She also spent long periods in her room and resting. This was her oasis to unwind and recover from communicating in a foreign language. She also had lengthy phone calls in Japanese to her friends. Without this retreat she would have burned out. We are all wired differently but every-ones brain/mind needs a place of comfort and familiarity.

She needs to use words, that's basically unavoidable, but if you could reassure her that she doesn't have to lose he pictures then that could make all the difference. Try and restore some of her pictures.

thank you everyone for the advice and insight it really helps. sorry it has taken me so long to reply but life has been very busy.

we are still trying to find a happy medium for her but it isnt easy

thanks everyone for the help, im sorry it has taken so long for me to reply. i have been very busy. we are still trying to find a happy medium for her but it is not easy. it does help to have these perspectives to understand her better thank you

It sounds so frustrating. She seems to know herself very well. I had not thought very much about my own experiences with this; maybe I assumed it was normal. That she's able to recognize it as significant makes me think she's pretty perceptive.

Does speaking exhaust her? I am wondering if perhaps she could sometimes use a back-up method of communication like sign language or picture cards, something that is a little more visual so that she doesn't have to constantly push herself to use words. It's a little like how you might, if you had problems walking, occasionally use a wheelchair or a scooter so that you could save your energy and get places faster--not because you can't walk, but because it's so exhausting.

I have had some similar issues with having to watch my own mind change. I was, from an external perspective, "more autistic" when I was younger. As I gained more ability to socialize and use abstract language, I lost some of the ways of thinking I had back then. My sensory style has changed, gradually. I used to notice every detail in the world, remember everything. Now, sometimes days and weeks pass in a daze. It's like I'm half-asleep. All those little details that used to flood in... now, some of them don't even enter into awareness. And yeah, I mourn that. I can't help it. It's like I've lost part of myself. It feels like time is passing faster and faster, and life is less and less vivid, even as I'm becoming more independent.

I don't know how you can help her, really I don't. But she's not alone. Parts of being autistic are beautiful, thrilling, enchanting, and you don't want to lose them, because they are part of you. And when your mind changes anyway, because you're growing up, you mourn the loss, just like you might mourn the loss of vision or hearing if you had lost those. At least, as she deals with this, she'll have a person who cares about her and wants her to be happy, who understands that this is a real loss and not just some "behavior problem" that has to be squashed. It's good to have family on your side.

we accidently found somethign to help with this very issue. iit was after when we got hit bye the churchbusn in dec. of 2001...an OT got a little wire bead loom kit far us adn used iit to help reteach us our rite from our left adn asol to improve fine motor skills as result of brain damage from when we got hit - we landed on our head mostly adnswlso left shoulder. well, anyways their was soemthgin about these littel seed beads that finally opened up our world liek nohtign ever had befoer. and we can make designs on varuios graph papers wiht colored pencils to get that pictuer creatign need espressed.r we cwn just nstart sewign beads together and withuot knowign what nits gonna look lierk till we decide its done. no rules. no one to tell u it rite r wrong .but teh beads always behave nteh same. if u sew them tog. a certain way, nthey always set next to each other a certain way. they dont lie adn they r a constant that never changes yet can be made to be different. (btw it took 2 hours adn a hole lot of tears to thread our first beadign needel).
now, 12 yrs, later, beadwork is still our hole world. ppls call us aq artist which is pretty cool. we get to go to pow-wows in teh summertime dn sell uor beadworkk theiir even tho we do not know whqt uor heritage is we r accepted because ppls. their accept us far our beadwork that we do not copy others adn they just like us. we have to set nd work on beadwork while their in order to not freqk out over all of teh ppl their adn we re4ally dotn talk much to anyoen but thats all rite we love lissen to the drums adn concentrate on them.
anyways, mabe ur daughter neede to find teh rite kind of somethign to do liek this where she get to express herself adn her pictuers.
mary
ps - u can go to our profile pg. an see pics of our beadwokr under pics & albusm