How would any of you handle this situation

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Exegesis
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04 Jul 2020, 3:21 pm

Greetings,

This is my first time posting here. I'll try to be as brief as possible. My wife and I have a somewhat unique circumstance. We have three children, one girl, and two boys with autism, high functioning however. Autism is CLEARLY present in both my wife's family as well as my own. I'm certain my brother is autistic, he just doesn't know it. To my point.

My wife has a sister who is in her late 30s. Her parents received a diagnosis when she was eight of Selective Mutism. They accepted that, and searched no further. It became clear to us however, after our son was diagnosed, that my SIL has autism. No question. My in-laws lives were run completely by the perseverations of my SIL. They accommodated her in every way that people of that generation did, in other words, they never sought outside support and just lived their lives in a way to accommodate all of her needs. They fought hard to get her declared disabled because it was clear she wouldn't be able to self support in a life of full independence. However, without an autism diagnosis, that fight was long and difficult, though finally won. Turn the page.

Both in laws have now passed and the responsibility to look after my SIL has come to us. However, despite the fact that my in laws had referred to my SIL as "autistic" (albeit grudgingly) she still maintains that Selective Mutism is the correct diagnosis. I will not go into the many and varied autistic tendencies that she displays, but suffice it to say for any of you that have dealt with this, there can be NO doubt.

So, my question is this, how do we deal with the obvious catch 22? The very thing she has (autism) is itself acting to prevent her from recognizing that the other diagnosis was incorrect. We all know that paradigm shifts are not especially easy for someone with autism. However, in order for her to make the kind of progress we'd love to see her make, I believe she needs to have an awakening. Instead of her saying "I can't talk because I have selective mutism" and then proceeding to "explain away" everything else with "Oh, I'm just clumsy", "Oh, I just could never learn to ride a bike", "Oh, I just like to have everything the same all the time every day", "Oh, I just like watching the same show over and over again and again", "Oh, I just have anxiety so I need to ask the same question (in a text) over and over again, even though I've already been told", "Oh I......definitely have to watch Wapner". :-) You get the picture.

How would any of you approach this issue? We have some ideas but would love all the input we can get.

Thanks, Exegesis.



Mountain Goat
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04 Jul 2020, 3:35 pm

Show them this site? By the way. Welcome. There are things to watch on Youtube. One young lady uses the title "Ask An Autistic".


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Juliette
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04 Jul 2020, 7:02 pm

Hi and welcome :). I too have 2 sons and 1 daughter who are HFA. They are adults now and doing very well, though I needed to home educate my youngest(at 21, he’s about to move out and into University housing in September as he’s starting a course in Directing(Movies). I hope your children are doing well. My eldest 2 were like twins, same height and 2 years apart. They both live independently and are quite successful.

I’m finding quite a few parallels with your situation. Both I and my daughter were selective mutes when younger. I have a family member who was in your situation, a female. I think that if she cannot accept the possibility of autism, then it’s best to let her be. If she needs any services, then, like the female family member I had that refused to acknowledge her autism, then you’ll likely find that the people who are in her life, will recognise that she does have challenges. So, this is a matter of accepting her for who and what she is. If you’re finding she needs specific assistance, then unless she agrees to be assessed, then she will likely continue on in her life as she is, until something specific starts causing distress eg her health deteriorates, she requires physio or OT etc.

My family member was never diagnosed, wound up in a nursing home, was VERY difficult to manage, but it was more or less accepted that she was autistic. She has since passed away. She would never have accepted that she was autistic.

It may well turn out that given time, your SIL will read a book you’ve left laying around on the spectrum, or with gentle discussion gradually consider the possibility ... it can throw up alot of emotions for someone accepting that they’re on the spectrum, whereas others might embrace it. Some people do fine without a label and just deal with issues as they come up. Some are very glad that they were not diagnosed, as they know it would have meant the bar would have been lowered, that they may not have achieved as highly.

Since your SIL sounds like she’ll require support in the future to live possibly in a group setting or somewhere with someone on hand to keep an eye on her well-being, you should be able to discuss with the powers that be your concerns for her, when that time comes, if you are unable to care for her. These situations do regularly happen. Diagnoses can be made, and the person may still shun the idea that they’re autistic.



Exegesis
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04 Jul 2020, 9:22 pm

Thanks for your input. We are trying to slowly introduce that idea to her. Perhaps in time she will have an AHA! moment, it's just bizarre for someone to be so aware that they are different from others, and yet cling to a diagnosis that only answers 5% of the picture. To me I would find it liberating. In fact, between you and me, my wife thinks that I am the highest functioning autist she's ever met! Lol!

Regards, Exegesis.



Juliette
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05 Jul 2020, 5:00 am

Here’s to AHA moments and self awareness :). Glad you’ve done well.



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05 Jul 2020, 8:34 am

Welcome. I have no advice to give you but I am sure you are in caring, good hands here.


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Juliette
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05 Jul 2020, 9:18 am

Teach :heart:! How are you?



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06 Jul 2020, 2:38 pm

All ya’ll need to read a good autism history book. Neurotribes or The Autism Matrix maybe.

You are both correct. She is autistic, but the name of her condition used to be called Selective Mutism. It’s silly, but normal, that the same symptoms are called one thing in one time period and then something else in another. If you really want to be thrown for a loop, consider what autism spectrum conditions were called in the 1800s or before. It may seem backwards or barbaric the way behavioral differences used to be categorized and described, but it was a different world with different contexts.

It helps to see how and why it changed in historical context so that all of you guys can agree on common meanings when you communicate.



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06 Jul 2020, 11:47 pm

So...does she NEED to acknowledge autism? It seems to me you could work around it, just like people here work around disclosing they have autism in their lives by just mentioning symptoms as needed.

Example: I don't tell people I suspect I have autism and find eye contact uncomfortable. Instead, I take notes while people talk at work, or tell them "I am listening. I just focus better when I stare at something boring."

You could flip that around. Instead of waiting for her to decide she may be autistic, just maybe go with "Hey, I noticed you seem to feel better when it's quiet in the house. Do you think having some earplugs or noise canceling headphones would be nice for when things get a bit loud?" Stuff like that.


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07 Jul 2020, 12:26 am

I don't understand why you think it's autism that's preventing her from seeing that she's autistic.

And I don't know why you think it's so important for her to recognize that she's autistic, so maybe this advice won't be helpful.

If I wanted someone in this situation to recognize her condition, I'd print out a simple, easy-to-read list of the traits of the condition and show it to her every time one of her autistic traits came up, pointing out which trait she was displaying.

That of course might very well annoy the hell out of her.


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Exegesis
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Yesterday, 10:05 pm

Thanks for all the input.

As for why I think autism is in itself a barrier to recognizing it, my experience has been that people on the spectrum get an idea in their head, and tend to ignore evidence to the contrary. She has had it in her head for the better part of 30 years that it's Selective Mutism, and therefore it is. Case closed. Being open to new ideas and change doesn't exactly stand as a hallmark of autism. :D

Regards, Exegesis.



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Today, 11:38 am

I mean, if she doesn't want the label, I don't think there's really much to do about it. I personally was super happy to have an explanation for everything, but if she doesn't need that for herself, I don't think you need to do anything.