Trying to Understand

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Greetings,
I have been with my fiance for approx six years. Her youngest son, who is now 19, is a high functioning autistic person.

I searched the internet to find help and support for dealing with her son.

I will be the first to admit that I don't quite understand this condition, so please be patient with me

To give a quick summary of her son's symptoms:
-Extreme sensory issues
-Social "cluelessness" - i.e. he has no friends. His behavior is irritating to others. Sometimes no filter in what he says
-Anxiety - i.e. taking tests, afraid of tornados
-Lack of executive planning skills - no planning ability. We have to tell him to do everything
-Emotional disregulation - Sometimes has anger/tantrum for minor things like being asked to do a chore
-Difficulty with transitions and change
-Difficulty with following verbal communication - i.e. we have to make a list for him to follow rather than him doing tasks himself (i.e. cleaning room, cleaning bathroom, etc).

Having listed all the items above, you'd think that I would get it...but I don't. When I look at him I see a fully functioning person whose achieved things such as graduated high school, had a brief relationship with girl, good working knowlege of computers and games, can converse with anyone about any subject.

So why is it that he cannot do simple things such as hygiene (wash hands after using bathroom, take shower every day and use soap, chew with mouth closed, etc). I find it very tiring to act as a babysitter for a 19 year old boy. I do apologize if my frustration is showing. I feel frustrated because of a belief that I'm holding that he's capable. I believe that if you treat someone different/special, that person will believe in their limitations and use it as an excuse in life. I'm not trying to be unkind. I hold the belief that he is very capable of doing things and behaving properly for his age. I am wondering if the issue is not so much the condition of autism but in his attitude. If he doesn't care/want to do something, he doesn't.

There's probably a fine line in all this between autism and attitude. I understand that some of you may have strong feelings in this and may not agree with my perspective.

I can't help but remember a high school buddy of mine who never left home. To this day in his mid 40's he's there. With my fiances son, he's all about video games and doing nothing. This lack of progress in life is something that he seems comfortable with and if we don't do something I fear it will be a never ending story.

As I write this, I feel a sense of relief just to get it off my chest. The other reason is to ask others opinions. Please feel free to share.

Thank you.

I will try to explain where your fiance's son is coming from in doing these things a bit better based on my experience.

The sensory problems cause a lot of things to be very annoying like the sound of fingernails on a chalkboard is for most people. It's kind of hard to explain what a sensory overload is like, but it sort of makes everything seem brighter and louder to to the point where it's painful, it causes a lot of anxiety and anxiety makes it worse so it's a positive feedback loop.

The social "cluelessness" is caused by the parts of the brain dealing with socializing not working as well, so less of it is done subconsciously and more of it is a conscious effort. On paper social customs are very complicated. It would be like if you were thrown into another country without knowing much about their customs, where eye contact is considered rude and where a thumbs up will be taken as "up yours". Anyone in that situation is almost certain to offend a lot of people and be seen as rude even if they are trying their hardest not to do that. Even if you read a book about their customs you would still probably fail at a lot of things and it would be hard to keep track of everything. That's basically how it's like for us a lot of the time.

The anxiety and difficulties with transition and change are emotional responses that are beyond our control. It's kind of like the fear reaction that most people experience when next to a cliff, you can't just shut it off even if you have a parachute or a bungee cord and you know that you will be OK. In the case of transition and change it's a dread and anxiety reaction, recently for me an unexpected change made me anxious enough to experience a sensory overload in a fairly quiet environment which takes a lot of anxiety to do. Same with the anxiety, it is involuntary despite often being irrational.

The lack of planning skills is a bit hard for me to explain because I have ADD too and sometimes it's hard to separate what's caused by autism and what's caused by ADD. Like the social cluelessness thing, it seems pretty easy because your brain is wired to do it but his isn't. There are a lot of seemingly simple things that the human mind is generally wired to do easily that is actually very hard on a computational stance. One such example is catching a ball, your subconscious has to use images from both eyes using depth perception to find the distance of the ball and after a few such images come in it must figure out it's approximate trajectory and accounting for gravity it figures out where it will be with very little conscious work. Executive functioning works kind of like that too, so it's easy for someone with no problems with it to say that it's easy.

The emotional disregulation and anger is also an involuntarily emotional response. It just kind of happens and we have very little control over it, often it annoys the person with these problems as much as it annoys everyone else. The only way it can be controlled is by bottling it up, but even that comes with it's own set of problems. There are some things that tend to drive us to wits end easily that don't bother other people, but there are a lot of things that annoy most people and don't bother us too. It's really just a part of being different.

Anyway, I hope that was helpful. Feel free to ask any questions you may have.

Hello Mikeman,
Thank you for your response. I appreciated your thoughtfulness and thorough explanation of the things that affect him. Part of my reaching out is to help myself understand. You make a good point that there are things beyond his control that I'm sure he has a hard time to contend with.

btw, I like the quote in your signature "I have never met a strong person with an easy past."

Incidentally, I have a long term problem with anxiety even to this day. Do you have any advise to cure/control this? I would be interested in any suggestions.

Cheers.

Since he is 19, I think he should be expected to do something other than stay at home and play video games.
Is he going to school?
Trying to get a job?

That's a good question and another point of frustration for me. He barely goes to school. He is doing upgrades since he's just graduated, so currently one course this semester. He has a part time job, but only 2-3 shifts a week and not full days either. I have discussed this with my fiance. He is interested in doing a computer network apprenticeship program with a local college. So he would work full time at an accredited company and then do some schooling as well. Once he's done is final exam for the once class that he has this week, we will be going full on to find him a job at one of these accredited companies. I only pray that he can get a job. We don't currently have a plan B.

Come to think on things, I forgot to mention that he has ADHD. I believe this is a possible source of his disorganization and forgetfulness. The other part of the equation is his willingness to do things that he's responsible for.

Knowing the cause of the problem is half the battle, but finding a solution is still in question. Having my finance and me constantly on him to do the simple things is the crux of the matter.

Please feel free to offer any other advise. I would appreciate it. Thank you.

Just a thought but it might help to explain your reasoning to him as to why you would like him to do things. Personally I am never good at reading between the lines when someone asks something indirectly. When I have something explained logically I can reevaluate and see what they were getting at but I would never have understood otherwise because I tend to take things at face value. I always forget that people don't mean what they say and that I'm supposed to analyse what they say for some hidden meaning. It seems obvious after the fact but I just never get it at the time.

Hello,

I am a mother of 14 years old boy, who has AS. Everything you wrote about how the son of your fiance sees the world and acts, I can say about my son, too.

He has ups and downs, changing one another and during better periods I notice I sometimes, when things are too calm, get relaxed and sort of "forget", that he has AS and then my demands and expectations towards him raise. He looks and acts just like any other "usual" kid. But then things go down and I come back to Earth, having to deal with things, that are sometimes hard to understand.

It took me few years of explaining almost every time I asked him to, why he has to shower every day. I felt like I won a huge prize, when he finally stopped arguing and simply takes a shower before going to bed. Same was with many other things. But he learns to cope. Slowly and painfully (not only for him, but for me, too), but he does learn. I hope he gets enough skills by the time he will live on his own.

I find help from reading books and watching documentals about Asperger's. I learn to accept the fact, that just as there are moments and situations when he (or any other person) can't understand, why I am feeling about something the way I do - and even others may not understand me, it doesn't make my feelings and emotions less real or non-existant, just the same way my son experiences things and sees the world in the way I can't fully understand, yet his perception is also genuine and real.

I think it is very caring and important step, that you are willing to understand your fiance's son. For me, personally, finding about the reasons works the best in accepting things. If you are interested, you can watch this documentary, where people with AS share their experiences - I so much loved it "Through our eyes: Living with Asperger's" (search it on youtube - as I found out, being a new member, I am not allowed to share links)


Here is a nice short cartoon "La petite casserole d'Anatole" by Eric Montchaud. It's about the boy, who is different from others and how nobody can't understand him, until one special person comes into his life. The only full version I could find is on facebook, it's in French with Russian subs, but the main idea is clear even if you don't understand the language. (same here, no link allowed )

Yet there is one book, that changed a lot in how I saw things - the author is autistic savant and the fact, that he wrote this book himself, gives it a great value. It's Daniel Tamemet's "Born on the blue day"

I know someone with ADHD who spent 6+ years finishing 2-year community college, so ADHD could be a big problem.
That person's biggest problem was being super slow to do anything, which is why it took so long to finish school.
But at least your fiance's son is going to school and working part-time with some plan to get a job, it is not so bad as staying home all day with no plan.
Does he understand that parents don't want to look after him for basic things forever?
Does he have any interest in getting his own apartment, if he gets a job in future?
I think he has to be want to be independent to learn skills for independent living.