Autistic parent? Please help

Well, my dad died before I even started on my autism journey but my elderly mum went through my diagnostic process with me and, over time, I gradually shared more information with her about autism.  Only snippets here and there, information and my own thoughts and nothing that I thought would lead to her towards feeling defensive.  

in the last few years of her life, we shared quite a lot of information, including the positives, and she eventually suggested that she might be autistic too.  It sort of had to come from  her but I think that taking it gradually really helped.  Otherwise there'd be a danger of the other person digging their heels in.

I had the same experience as you in that there's little information about for older autistic people, but what I did find was that when I went to autistic-led sites for info (books and webinars) there was actually quite a lot that could be applied across the lifespan.  I do think things need to change, though, and include much more specifically for older people.   

Hello

I have just today signed up for this forum in the hope of finding advice on a very similar subject. I am 43, I have very young children, and I think my 80 year old Mum might have aspergers. This isn’t something I feel I can talk to other members of my family about, my Dad and brothers. 

I find the whole situation very difficult. I guess because it is this hidden/denied thing? It is complicated by other factors relating to older age. 

It causes me quite a lot of stress, especially around my children and the sort of hidden nature of it. I’m also coming to terms with what my home life was like growing up.

I don’t feel very able to talk freely here, but I need some sort of support group/understanding and am not sure where to find it. Sadly I have had experiences with forums like this where things have descended a little bit into attacking others rather than supporting. Not on here of course, as I only signed up 15 minutes ago, but elsewhere.

Any resources/groups/books on this subject greatly appreciated.

It’s not that autistic people can’t take another’s point of view, autistic people can recognise that accepting another’s point of view is not the best option nor good for them and actually sometimes hurts them.

Concerning compromising, that’s actually very hypocritical of non autistic people because if non autistic people were compromising we wouldn’t be living in an inherently ableist world with people thinking it’s better for autistic people to do everything the same way as non autistic people. Going shopping for example, so many autistic people over sensitive to lights and sound are forced to go to shopping stores to find themselves bombarded with bright lights and loud noises put in physical pain because the non autistic people in the family think their way is better even though it hurts the autistic one. That’s exactly why they refuse to accept so many points of view, because they know it hurts them physically and mentally.

Anyone who would put themselves in an autistic person’s shoes would describe non autistic people as plain hypocritical. Like when an autistic person misunderstands a non autistic person it’s a deficit, but when a non autistic person misunderstands an autistic person it’s so natural and not a deficit at all.

Hi,

Just here to say that Catlover has given you the most wonderful response! Please understand your mother and accept her for who she is.

I would also look into the ‘Double Empathy Problem’, a social theory which affirms that - being of different neurotypes - not only does your mother have a difficulty understanding (and therefore compromising with) you, but you also understanding *her*.

At the end of the day it’s not an autistic problem per say - autistic people are just the minority and therefore the ones standing out.

All the best. 

Sorry to hear things are stressful for you at the moment. A lifetime looking after someone who has Autism is tough. I know how tough my marriage was, and this was all before I realised….

Might you be able to arrange some respite care, to give yourself a break? Regardless of the reasons, you are your mothers carer, and you should be able to access some help. Also, do you have any siblings to lessen the load for you?

Do try and educate yourself a little more so you can understand your mother. At her age, it probably won’t matter to her as she’s too long in the tooth to worry about it. Change is also not an option. Best to try and stick to her rules and routine. Realise she won’t bend, and however unreasonable you feel she is being, she can’t help it. Nothings intentional. She just has her way, and cannot understand your compromises.

I suspect my mother is also on the spectrum. She is aware of this now, and is still in the process of attributing things from her life to it. She can’t be bothered to get a formal diagnosis as she says it doesn’t matter now. She is learning to be nicer to people that she knows, and by that, I mean less blunt and rude. She’s also a lot less hard in herself. When she is struggling with different aspects of life or communication. I don’t see much of a problem with how she is generally, as I also suspect I am on the spectrum, and I’m being assessed in December.

Not quite the same situation as you but I’m 69 and have been married for nearly 50 years to my husband who I now suspect has Asperger’s.  Life with him has been very up and down and we’re still together, I think,  mainly because of the compromises I’ve made in our lifestyle.  We rarely socialise, we have no joint friends and his special interests are solitary activities - computer and reading - which don’t include me.  Like you, I’m exhausted, and often lonely.  I was 15 when we met, so I have grown up and grown old with his ASD quirks, routines, fixations and difficulties in social situations. Living with undiagnosed ASD is hard but when you love the person there seems to be no way out.  
For me at the moment, I am reading as much as I can about what it’s like to be Autistic so that I can put myself in his shoes.  It certainly helps to get an understanding of why the person does what they do.  If your mum has ASD she won’t be able to see your point of view in many situations because she doesn’t think like you.  I’m not sure what research you’ve done so far but some of the books written by partners of people with ASD may be helpful.  I’ve just finished “Alone Together” by Katrin Bentley which was helpful and Professor  Tony Attwood has some interesting videos on his website.

Hi.  I can't give any advice on having to care for an autistic parent as not had to do that, and don't know of any books, but thought I would just suggest getting a social services assessment.  If she is autistic then you probably won't be able to reason with her, autistic people tend to be rigid and inflexible, you may have to accept her as she is.  You need to be able to cope, if you have a baby as well, so its best to get help/support.

Hopefully someone here might be able to relate, but another thing to try is to reach out to other carers on forums or twitter/facebook etc.