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IamAspie Asked June 2014

Should I tell my parents I can't take care of them because I have Asperger Syndrome?

It is very hard for me to be their caregiver because I have trouble understanding emotions and communicating with others. I am not able to recognize their needs and feelings. I am the son that lives near and actually do some help with appointments and errands. Dad and mom always believed I was a shy person not realizing I am struggling with this all my life. Dad gets upset when I am not in touch, even when I say I like to be alone. I had to lie to them when I go to therapy, I say it is a routine medical visit. If I tell my parents they will believe I am mentally ill, even I am afraid they will tell everyone.

amicable Jun 2014
My Aspie son is in his mid 20's and doesn't drive or have a job. I sure appreciate everyone's takes, because I was considering paying him to take care of my Mom, certainly not for everything, but certain tasks, like housekeeping and cooking. Only problem is that he gets so into what he's reading or writing, a bomb could go off in the house and he wouldn't even look up! He's very kind, sweet, and smart, but I wouldn't say attentive! So I guess it depends on every individual and their unique abilities…what a great analogy with the back problem…you do what you can and hire someone to do what you can't or would really rather not! I agree with the "label" comment…I wish my son didn't have it, because it does tend to get in the way, and I can understand you not wanting to be public about it. However, it does help other people understand things about you. Definitely share it with the social worker, but your parents don't need the label.

50sChild Jun 2014
Chimonger, what a depth of understanding you have! Thank you for the roadmap you shared, it is incredible. I promised to find resources and I am looking as I post this. Remembering my ancestors, stoic and just farmed, hard. No problem. No conversations. Just support and basic security from their unspoken love.

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chimonger Jun 2014
Thank you for posting this question, because it's one happening in our family, too.

Clarifying with them what they believe "caring for them in their old age" means to them, could be helpful and, might help lower your stress over it. It might also help to learn what direction to go in, to get best help.
You might learn they expect far less than you might imagine. But even very little actual care-giving, might be a source of too much stress, if you understand the situation from an incorrect perspective.
You know there's good cause for setting limits on other's use of you; they are now at an age where they are not seeing that. Setting your rational limits on their expectations of you, might cause them to show anger--they really fear no one can help them when they need it, you are the only one they can think of to expect to care for them.
Help them find other options!
Consider: if you are Aspie, then likely, one or both of your parents have some characteristics of that, too. Part of that might include getting stuck in a one-track mind solution.

Aspie runs in my family like a river--yet, no one in a few generations would ever admit to it--they all "got by", finding niches they fit into.
They are not likely to suddenly be able to see "Aspie" as "wired differently"--they will see a Label like that as "mentally ill". Even some websites supposed to be helpful for ASD, treat it more as a disease to be cured, instead of "a bit different, but perhaps some advantage; not a "wheel-cogged sheeple". Some of my younger siblings are against even testing for it, their attitude is " I got by this long, what's the point of having a label that might cause job losses or other adverse issues?"

It's helpful to know there are more people similar to yourself---kinda supportive in an abstract way--like preferring to have someone in the house with you, though not necessarily talking much with them.
IF there are supportive groups that can assist in issues like elder care--Please Share!

Your folks existed a lifetime in society that didn't label or recognize Aspie, didn't do anything about it. In that respect, getting them to understand it, might be like throwing yourself against a brick wall and could bring other problems out in them that could make caring at any level for them, harder.
For instance, my being any kind of ill or limited was best kept from my folks, because their reactions included: "if you're sick, I'm sicker and need more care than you!", to "you're just attention-getting", or, "just get over it". Mostly, those responses were their own fears, badly expressed. Kinda like a Doctor telling a patient "sorry, can't do much for you because your condition is genetic". Those kinds of responses are actually telling the person that the Doc or the parent can't deal with whatever information they got presented with--it's beyond their knowledge-base, experience, or their ability to understand, for many reasons.

Aspies have difficulty 'reading' social cues and interpreting other's emotions and responding to them properly, but we DO have feelings--which also might be hard to read until too late, by others, compounded as it can be by increased difficulty communicating----others have a harder time reading Aspies, too.
Both sides must work harder to help others understand better--it's about communication, adapting and learning.

Learning to set your limits on others use of you, might be a bit harder to do, but it has to be done.
IF there are support systems for Aspies experiencing this, great.
===Otherwise, talk with their social worker--do your folks have one yet?
Maybe you can help by finding one for them----then you speak with their social worker---that person should be able to better grasp what your folks can't., and figure how best to help.
===IF you are a welfare recipient, the social workers there are usually [my experience] fairly friendly and helpful----if you are getting State help of any kind, go to the welfare [DSHS] office, and talk with a Social Worker there, to learn what helps exist for your circumstances.
It helps to write your questions and concerns on paper, so you remember all that needs communicated--and then keep asking whatever questions come up; keep in timely contact with the social worker as things may change over time.
===Otherwise, look up your local "Area Agency on Aging".
Ask them to hook you up with a social worker who can advise you, assist you to deal with your parent's care.
That gets your conditions on record with Social services, which could help prevent other agencies from assuming you are fully able to care for your folks.
===Are your folks fully mentally capable/ in their right minds? Or, do either or both have some level of aged-brain or dementia, making it harder for them to cope daily on their own?
Parents see their loved, smart, perhaps clever, though quiet/shy/quirky kid---especially if you've managed to "get by" fairly well on your own....which makes it far harder for them to understand why you can't take care of them in their old age.
If you're an only child, even harder.
At this late stage, your folks will not likely grasp "Aspie"; they are desperately seeking solutions for their problems, and it is historically and in some societies, natural, to believe the adult child will become the parent's caregiver--in some places, even minor-aged children are expected to caregive an elder.

You have a more logical mind. It is a great asset. Use it.
There also might be some OCD tendencies--use those to your advantage.
Try to keep good records--a notebook or something--write dated entries, what parents say or ask, or odd behaviors, as well as your responses and actions----this is a record that can both help you understand, and might also protect you from others thinking something is wrong with what you are doing.
This can also help you communicate with Social Workers or other officials.

Please keep us posted how you are doing!
Please feel free to ask more questions, ask for morale support for care-giving--this is a good place. Plenty good advice, also references to things to help.

alwayslearning Jun 2014
The point isn't whether you have Asperger's or not; the point is you setting healthy limits on what you can do -- for WHATEVER reason -- and not being guilt-tripped into doing more than that. It's time we all stopped being afraid of our parents' anger or pressure or non-understanding. They're just people, and we're not kids.

tryingstill Jun 2014
I agree with 45aliceeileen - take care of yourself first. Just dealing with Asperger's can be a huge challenge. You already help with some errands and appointments and you shouldn't have to be the only one to shoulder all their needs when you're trying to handle your own difficulties. Maybe, as someone else suggested, you could ask your therapist if, or how, you should tell your parents. Sometimes it can help to let go of a secret. I kept my struggles with OCD & depression a secret for many years and it takes a toll trying to hide it. I don't think of Asperger's as a mental disorder.. Isn't it more of a developmental disorder (maybe I'm wrong about that)? In any case, in this day and time, you would hope folks would be more accepting of your diagnosis. I'm no therapist, though, so that's why I think you should discuss this with yours before you consider telling anyone.

IsntEasy Jun 2014
Diagnosing conditions such as Asperger's and ADHD is a recent practice. The milder forms of these conditions were simply considered someone's 'nature' or personality. So, you have to take that into consideration when judging your parents ability to accept as a disease something that they merely consider your unique personality.
Like any adult child who is facing the role of caregiver for their parents, you have to determine what you are or are not willing and able to do. In the same way that someone with a herniated disc would be smart to get help with any task that would involve lifting their parent, you should assess which tasks you are not up to and get help with them. It can be that simple.

stevensmom Jun 2014
If you feel you cannot take care of your parents, no matter the reason why, kudos to you for recognizing this now. Depending on the others in your parents' lives (siblings, social workers, doctors); it is important to find the one person who can start getting services lined up as your parents need them.

Could you tell us a little more about their situation? I see they are living at home, do they have the financial resources to hire a care manager? Any other family near-by whom they trust? Is your address Puerto Rico? I don't know if there is a huge difference in the medical system there compared to here (in Iowa). We have an Area Agency on Aging to call for assistance.

Do you have a hard time calling your parents? I do and sometimes I have a hard time going to visit them, even though I am not diagnosed with Asperger's.

You are not alone; I hope you have at least one person to whom you can turn to for support. The people on this site will always be willing to help, so if is easier for you to come here than to talk to people in person, come here as often as you want. Peace and good wishes!

45aliceeileen Jun 2014
you sure can tell them .I know Aspergers is enough for you to handle .Please don't get stressed out by other things .Take care of yourself first ,Your parents know how you are .Why do they expect this big responsibility put on your shoulders .

assandache7 Jun 2014
I'm curious what your therapist says about telling your parents?

Please know you can and should be seeking outside care for your parents.. Like every caregiver we get to a point when our lived ones care become overwhelming and we need to step back and let the professionals take over.

Good luck..

50sChild Jun 2014
My nephew has Aspergers, and opted to take care of his Grandpa in exchange for pay ($15/hour), because he was having an extremely difficult time with jobs. We learned that it was critical to actually write down the exact tasks expected, which was meal prep, laundry and Grandpa's bathroom cleaning. We wrote down exactly what days, hours, tools used, etc. Nephew was incredibly conscientious about meeting those expectations. But could not grasp the "soft" feelingful stuff which non-Aspies do without thinking. As Grandpa declined, Nephew could not roll with Grandpa's incontinence, repetitiveness and cognitive changes and began yelling at Grandpa. After three years of loyalty, my Sister and I had to hire professional caregivers. In retrospect, it seemed Nephew was extremely logical: "Grandpa shouldn't be like that; I yell at him til he comes to his senses." There was no malice or ill-will in Nephew. Just pure logic. That is how it struck me. Maybe assess what you do now, and reach to ask yourself if you can keep it up once your parents' physical and mental condition goes South. But also protect yourself from others not understanding your brain set-up. I don't know if there is a caregiving sub-group for Aspies, I suspect there is. I would be happy to research that for you.

JessieBelle Jun 2014
Having Asperger's doesn't necessarily mean you wouldn't be a good caregiver. In some ways it might be an asset in setting up what needs to be done and then doing it. The one reservation I would have is knowing how an emergency would affect you. Only you can know that, since you know how things go for you.

I know that you can grow up aspie and have people around you never acknowledge it. My father I am sure had Asperger's. He kept to himself and didn't bond with anyone but my mother. He was successful in his job, though. If you were to ask my mother, she would say nothing was wrong. He just didn't like being around people. She never worried about his not bonding with his children. They lived 65 years together and she never thought anything was off at all. I have a brother who is very much like his father, but again my mother says he is just quiet. I understand how your parents don't recognize things.

My only recommendation is to decide what you can and can't do for them. For example, maybe you could do things like taking them to the store or doctor's, but maybe you can't get involved in their day-to-day lives. It is the same advice I would give anyone thinking of being a caregiver.

If your parents don't accept you have Asperger's, I wouldn't force it too much on them. The term didn't even exist in their day, so it would probably strike them as crazy and futuristic. I would set limits on what I could do and help them arrange services if their needs exceed what you can do for them.

pamstegma Jun 2014
They raised you, so they know full well what you are like. Maybe they don't have a label for it, but they know. You share your status with their social worker and their doctor so no one tries to push more onto you than what you can handle. So glad you are staying ahead of this.

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