Autism / Autism Spectrum Support Group
Autism is classified as a neurodevelopmental disorder which manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior. Although the specific etiology of autism is unknown, many researchers suspect that autism results from genetically mediated vulnerabilities to environmental triggers.
Hello all... Been a long time since I've posted here (a case of no news is good news). My question for the community is about dealing with end of life issues and helping a spectrum family member cope with the strong emotions that accompany.
Dad, who is 90 (and who we have long thought is an undiagnosed Aspereger's), was admitted to a nursing home recently. It looks like this is most likely a permanent thing. Cognitively he's mostly still there, but it's hard to tell- he is so deaf now that conversations tend to be short and he seems to prefer to communicate by gesture when possible. Every now and then he calls me "Dad;" I suspect it is because I am now at the age and appearance that matches his memory of his father and his word retrieval is a bit off.
He seems to be coping with his placement, mostly because he needs so much physical assistance (and he keeps falling). 82 y.o. Mom is physically incapable of managing his care at home... However, my worry is for my sister, Janie.
Janie (pseudonym) is my only, and older sibling. We are both in our early 50s. She has been living in an independent supervised apartment and attends a mental health drop in center. Although we have never received an official or specific diagnosis of her disability we think she may be a high-functioning autistic, with borderline normal intelligence. She is not able to hold a job and receives a disability income. Her strengths are that she is self-aware enough to know when she needs help, she knows how to access her support system, and she does make use of it.
This situation is taxing her to her limits, she is having more meltdowns than usual, she is fearful of so many things. She seems to be unable to stop running "what if" scenarios in her mind - which she then tries to solve; except that her solutions inevitably involve some impossible sacrifice on her part that frightens her even more. Even though she knows it is only a "what if" she still seems to respond emotionally as if it were real.
A further issue is that whenever conversations with medical professionals occur with my Mother, Janie tries to be involved, even when it is not appropriate for her to do so. I sometimes accompany Mom because at this point I'm the one whose cognitive abilities are the most intact (though I must admit that sometimes the stress of it all makes me pretty stupid). Janie doesn't see that function, rather she feels jealous and left out, even though we do keep her informed as quickly as we are able to process the developments ourselves.
On top of all of that, I wonder how to talk to her about death, how to help her to see it as not being the most evil thing ever, that, yes it's sad, heartbreaking and painful, but it isn't the end of the world and doesn't require us to abandon our lives...
Have any of you had to have conversations like this with your spectrum family members? If you are on the spectrum and have lost close family members what helped you cope? Any advice on how to help her navigate the constant flood of strong emotions so that she isn't so overwhelmed?
...and please someone upload a bucket of patience for me, there is only so much high emotional drama I can weather before my reserves are gone...
Many thanks for reading through!
Brian
Dad, who is 90 (and who we have long thought is an undiagnosed Aspereger's), was admitted to a nursing home recently. It looks like this is most likely a permanent thing. Cognitively he's mostly still there, but it's hard to tell- he is so deaf now that conversations tend to be short and he seems to prefer to communicate by gesture when possible. Every now and then he calls me "Dad;" I suspect it is because I am now at the age and appearance that matches his memory of his father and his word retrieval is a bit off.
He seems to be coping with his placement, mostly because he needs so much physical assistance (and he keeps falling). 82 y.o. Mom is physically incapable of managing his care at home... However, my worry is for my sister, Janie.
Janie (pseudonym) is my only, and older sibling. We are both in our early 50s. She has been living in an independent supervised apartment and attends a mental health drop in center. Although we have never received an official or specific diagnosis of her disability we think she may be a high-functioning autistic, with borderline normal intelligence. She is not able to hold a job and receives a disability income. Her strengths are that she is self-aware enough to know when she needs help, she knows how to access her support system, and she does make use of it.
This situation is taxing her to her limits, she is having more meltdowns than usual, she is fearful of so many things. She seems to be unable to stop running "what if" scenarios in her mind - which she then tries to solve; except that her solutions inevitably involve some impossible sacrifice on her part that frightens her even more. Even though she knows it is only a "what if" she still seems to respond emotionally as if it were real.
A further issue is that whenever conversations with medical professionals occur with my Mother, Janie tries to be involved, even when it is not appropriate for her to do so. I sometimes accompany Mom because at this point I'm the one whose cognitive abilities are the most intact (though I must admit that sometimes the stress of it all makes me pretty stupid). Janie doesn't see that function, rather she feels jealous and left out, even though we do keep her informed as quickly as we are able to process the developments ourselves.
On top of all of that, I wonder how to talk to her about death, how to help her to see it as not being the most evil thing ever, that, yes it's sad, heartbreaking and painful, but it isn't the end of the world and doesn't require us to abandon our lives...
Have any of you had to have conversations like this with your spectrum family members? If you are on the spectrum and have lost close family members what helped you cope? Any advice on how to help her navigate the constant flood of strong emotions so that she isn't so overwhelmed?
...and please someone upload a bucket of patience for me, there is only so much high emotional drama I can weather before my reserves are gone...
Many thanks for reading through!
Brian
First of all I am SO sorry for all that you are going through... I have high functioning Autism and have been through sort of this type of issues, not with the in-home family but still very close family. I do have some things that I think could help and that maybe her support system she uses can utilize (even you yourself even if you are hanging in there). However, I do have to get to bed right now so I'll have to post tomorrow and think about how to compile all my thoughts so they all sound write when they are written.
My prayers for you and everyone,
Love Kris
I too have a Mother 90 years old, and chair bound living at home with my younger brother, now 49, and moderately functioning because of a birth accident causing brain damage. He is unable to live on his own, because he does not have financial sense, but he does everything in the home for the most part, and they have a few hours of help to get Mother bathed and dressed. My Mom is very witty but suffers from Old Age stiffness, and general health failing( Bp and arthritis, and drug side effects).
My brother has my older sister and her husband to get is all together, being he is a MBA and she is a MD. It is all quite frustrating for him because he gets stressed out being bossed around by them. They are real A types, and stress me out too. Not saying that you are like that, but I see this, so I am just chatting, for what it is worth to you.
I think that as long as you treat her as an equal, and let her know that the best thing for your Mom is what she wants, and let your Mom tell her to tell you to help them. The what if thing is a reaction, so have the conversation, and always say we will figure t out then, just like a empty response, like.."that's cute"
She needs to know that your parents are frail, and you need to stay in the present, and take one day at a time. Maybe network in a grief support program in the event that you need help with the event of their passing. You will find someone in your town to help.
She knows when to ask for help... let her know that is her answer to when an what if may ever happen.
Good Luck!