My Son Is Trying To Ignore His Disability

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I am not sure what it means to ignore your disability. Does it mean not let it define you? Does it mean not let it stop you and limit you because of what the books say about it? Does it mean not dwell on it and fret over thinking everyday what you are doing is because of your diagnoses or because it's just part of being you or even thinking "would an Asperger's person make this choice or a normal person?" Or does it mean pretend he doesn't have any problems so he won't work on anything to improve to help him in life to be functional and just blame all his problems on society and pretend it's everyone else's fault you know having the victim complex?

Well I don't have a problem with someone not accepting a disabilty label. My son has High Functioning Autism rather than Aspergers. He also has Poland anomaly which means he had a blockage of the subclavian artery in utero so his right hand never developed and he is missing the pec major muscle on that side too so he a bit lopsided. When he was born we didn't know he had HFA, just that he had Poland anomaly. A social worker wanted to sign him up for a disability support pension and I refused. She kept saying 'But he's disabled!' I told her she was dumb and that was a bigger disability than anything my son had. We banned the word disabled around him. He is different, not less. When you disable an engine it means you stop it working. If I had to use a word to describe my son I would use handicapped because in horse racing a handicapped race means some of the horses carry a greater burden and this is how I see my son. He is running in the same race as everyone else, he just does it with a greater burden.
He now lives in Japan. He won a full scholarship from the Japanese government to the University and course of his choice. He is a smart cookie. He is studying law and aims to be a human rights lawyer and specialize in disabled rights. He does not view himself as disabled but wants to help those who suffer abuse and discrimination because they are different.
He has a mission statement on the wall above his desk that says

Give voice to the voiceless,
Comfort the afflicted,
Afflict the comfortable.

He is one cool dude He accepts himself for who he is, not what other people want him to be. He says labels are for boxes not people. They allow people to be lazy and not bother seeing and getting to know the individual. I think he's right.

Bunnyb,

Your son has a great attitude. I wish him all the best in life.

My advice is to just let him know that this is the age when people are typically learning two things:
• academic skills/knowledge for school / vocational skills for work, and
• life skills for becoming independent.

Many people fail to mention the life skills, probably because it seems so obvious, because some people can learn it without consciously studying or practicing. But everyone (whether they have a learning disability or not) has a different learning style. Some people learn best verbally; some people learn best visually; some people learn best manually...

He may need to consciously study and practice life skills. By this, I mean that he may need to take a class, or read a self-help book, or make it his personal project using trial and error. It is up to him to decide that, but it is also up to him to be honest with himself about his needs in this.



I wish someone had noticed and told me that I need to be taught things explicitly, that I need to learn things consciously, and that I struggle with life skills. Everyone always only focused on academic skills and vocational skills. So, when I graduated university, and tried to move out on my own, I failed.

It has taken several years for me to figure out what was wrong with me (why I failed so horribly). Now I am slowly learning what I should have learned back in college and university. Meanwhile, my degree is worthless.

_________________
31st of July, 2013
Diagnosed: Autism Spectrum Disorder, Auditory-Verbal Processing Speed Disorder, and Visual-Motor Processing Speed Disorder.

Weak Emerging Social Communicator (The Social Thinking-­Social Communication Profile by Michelle Garcia Winner, Pamela Crooke and Stephanie Madrigal)

"I am silently correcting your grammar."

Knofskia,

Your post could practically be mine, word for word. I feel absolutely unequipped to do anything and feel completely worthless right now, despite having a university education. I am aware of my status, in terms of life experience, as the dummy in every room I'm in. Even those who say they goofed off in school when they were younger are so far ahead of me in adult life that I could never hope to catch up.

I am sorry that you are dealing with this too, IstominFan.

I can only focus on one thing at a time. Whenever I focus on accomplishing anything, everything else gets neglected. If I try to improve something that was previously neglected, then the first thing gets neglected along with everything else.

For all 18 years of my school career, my focus was academics, and only academics. I did not get enough nutrition, any exercise, adequate hygiene, any friends, or fulfilling hobbies because I had no spare time, mental resources, or energy. It was the only way to manage the academic demands.

Now, all of my skills are poor: my academic skills, because I have not practiced them since graduation; all other skills, because I never developed them in the first place.

Dear God, I still cannot work, because, if I were somehow able to get a job out of pure charity, my brain would only be able to focus on the job, neglecting everything else AGAIN. But good luck trying to get Social Security Administration to understand or believe that when you have a Bachelor's degree.

_________________
31st of July, 2013
Diagnosed: Autism Spectrum Disorder, Auditory-Verbal Processing Speed Disorder, and Visual-Motor Processing Speed Disorder.

Weak Emerging Social Communicator (The Social Thinking-­Social Communication Profile by Michelle Garcia Winner, Pamela Crooke and Stephanie Madrigal)

"I am silently correcting your grammar."

Knofskia,

Sorry you are going through such a difficult time.

I realize that, when I read some of the truly daunting obstacles many people on this board go through, that my own difficulties really cause me personal embarrassment. I am fortunate to be in good health, I do work (not full time, but I do have more responsibilities that allow me to interact more with my co-workers) and a greater variety of opportunities for social interaction. A personal issue has been resolved, and I'm ready to get back in the swing of things.

I am still unsure whether I will ever fully apply my educational skills at the highest level, but I am working on it.

Thank you, IstominFan.

Do not feel embarrassed though. Life is hard, for everyone. We should all be more sympathetic and understanding for (even the little) troubles in life. Not saying that what you are going through is little.

I just wish the people who say that they are willing and eager to help anyone in need would recognize that I need help even though I and my history does not look stereotypically disabled.

_________________
31st of July, 2013
Diagnosed: Autism Spectrum Disorder, Auditory-Verbal Processing Speed Disorder, and Visual-Motor Processing Speed Disorder.

Weak Emerging Social Communicator (The Social Thinking-­Social Communication Profile by Michelle Garcia Winner, Pamela Crooke and Stephanie Madrigal)

"I am silently correcting your grammar."

I think you already have a lot of great feedback, so there is just one thing I want to add that I'm not sure has mentioned: when you talk about your son's issues with decisions, it strikes me that he may have anxiety as a co-morbid. I think you have a good approach to that already, but sometimes it helps to see issues as having a separate cause, so you can expand your research on possible protocols for fixing them.

My ASD son has been living on campus for 2 years already but he really has never faced anxiety as an issue. We worry about him a whole lot more than he worries about himself. He just moves forward, for good or for bad; whatever. He is involved with the Anime club at school and I'm sure your son could find kindred spirits in that sort of group. My son definitely sees his ASD as part of who he is and long ago structured his life to avoid being overwhelmed by his sensory issues. He also learned tricks to work around his issues and long ago incorporated those into his daily life. However, other than that, I would say he pretty much ignores his ASD. Few of his college friends know he has a diagnosis; there just has been no reason to bring it up. So, as others have noted, whether or not you should worry about your son's intent to ignore his ASD depends on what he means by that. I agree with the others that it most likely is a good thing at this phase in his life, but I cannot be sure without knowing exactly what he thinks it means.

My mostly NT daughter, however, does suffer from anxiety and we've found it can be quite debilitating. It is the anxiety that stops her from moving forward, and sometimes from meeting even the most basic of obligations. I am finding it incredibly challenging to deal with, but that is largely because she is so layered, with so much built-in self-defense. I could always trust my ASD son to tell me what he is thinking, and although I usually needed to do a little "translating" to understand what he really meant, his insights into himself were solid. With my daughter it isn't like that; everything is covered in multiple self-defense layers, where she lies even to herself, and I've assumed that is because she is NT, but I don't really know. If anxiety is playing a role in your son's issues, you may want to consider working with a professional to see if it can be alleviated.

I will note that I would not want my daughter away from us while she is going through this; I don't trust her to cope with what life throws at her. For better or for worse I know my son will just plow through it, but my daughter will lock herself in her room, immerse in videos, and hide from the world. If she wasn't nearby, I wouldn't even know if she hit a phase; she would so easily lie about it. Just to give you some comparison on how I feel about the issues and their affect on living independently.

As for being taken advantage of, I've steeled my son against much, but to a large degree it can fall into "what is the worst thing that will happen?" category, IMHO. If a friend is good at conning him into always buying the coffee, it isn't a big deal. But if he were to get cat-fished on the internet, that would be a big deal. Since he seems to be aware of the big things, I feel pretty good about him on this score.

Anyway, best of luck to you. All children learn and grow at their own pace, and staying in tune with your son, talking and listening to him, will help you know what he is ready for.

Let him "ignore" his Aspergers--but watch him like a hawk when he goes away to college for the first time (but don't let him know that you're watching him!)

Kids frequently have problems with time management when they first go away to college. He might also want to seem "normal," so he might go to underage drinking parties and do foolish college antics. This will affect his grades. his nutrition might suffer, and he might feel depressed and homesick.

My nephew flunked out his first year, then went to a "commuter" community college, where he did well. Then, lesson learned, he succeeded at a large dorm/apartment type large university.

You do have to keep track of him, I believe. What I mentioned are the pitfalls experienced by NORMAL young people.

That's me in a nutshell! I would not have been sad, either, because the person survived the ordeal of cancer.