ASD parent, provisions for ASD adult child (may trigger)

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Hi everyone
I believe I am on the ASD spectrum and that many of my family members also are. I didn't think I was coping all that well, and I didn't think my future looked very good, but recently I have got the chance to care for my adult son who has been "properly" diagnosed with autism.

I have found life hard, but I am female, so I was able to get married and I contribute by taking very good care of the finances and our health, by researching everything, by running a low-stess business from home, and by being a stabilising influence for extended family. But my son is male, in his 30s, and I realise that it is very different for males on the spectrum.

I am increasingly aware that I will not live forever, and the chances of my dying unexpectedly increase every year.
My husband is not my son's father and he does not (yet) feel very protective towards him.

This adult child has been almost completely out of my life for a very very long time, but is allegedly coming from overseas to live with us soon. I want to know, from the adult autistic males on here, what have your parents been able to do that has helped you the most? What have you all talked about or arranged for when they are not here anymore? I apologise if this is triggering, it certainly is a bit for me.

My wife and I are somewhat concerned about what would happen to her daughter if our support for her ended. To that end we try not to over-help her now, and to encourage her to solve her own problems so that she becomes less dependent on us over time. It's always hard to know how to gauge this on specific problems, so we try to give her the chance to solve her own difficulties (which she much prefers to do, as she hates being dependent) while being somewhere in the background in case she fails. As we also have our own lives to lead, sometimes we just can't be there for her anyway, so fate occasionally creates its own challenges for her.

Her specific needs tend to be about dealing with service providers, health providers and benefits people being among her biggest problems. We've begun to encourage her to take a stab at filling in her own forms etc. and just giving her help when she gets stuck. She's responded quite well to that.

When we were getting too much to deal with, we were hoping to get her a paid advocate of some kind to take over some of the strain, but the ones we tried didn't prove very useful at all. She does have a therapist who doesn't seem so bad though, one who is very much on her side and seems to understand the need to encourage her autonomy.

Really it's much like raising a child - giving them the help they need but always with a view to equipping them with the tools required for becoming a fully-fledged independent person. Not that I'm saying all Aspies end up fully independent, but in our case she was diagnosed as having quite a severe level of ASD and yet she seems to be making strong inroads towards autonomy, though it's taken many years and there were times when we despaired of her ever getting there.

These days she's sometimes quite helpful to us, looking after our animals while we're away etc., and I think that does her a lot of good because it makes her feel less of a dependent blob, more of an equal who operates some kind of reciprocity.

ToughDiamond thank you so much, normally I would have been able to "grow into" the position but I haven't had that chance. I don't have friends yet who are in a similar position.

It sounds like you are doing everything you can to help your daughter be independent. When I search for ideas from other parents I don't find much that you have not mentioned. It's a hard question what to do "when you care but can't be there".

I wondered about an advocate too. Can I ask, roughly what age group your daughter is in?

^
She's 29.

Just a few years younger than my son. I like to think they are just late bloomers, as I am

I guess it all boils down to how severe and what type of autism spectrum traits your son is expressing. There's not enough information you've given to provide you with any specific response. But I guess that you need to learn a lot about your child, too.

I am adult man with diagnosed autism spectrum (Asperger's). I am highly functioning, but I am hesitant to call myself fully independent. There is simply way too much stuff in life I am struggling to deal with on my own. It's not even that I cannot do these things, it is more of not knowing where to start plus the overwhelming feeling of anxiety when I need to make decisions with potentially weighty consequences.

It has always been like that. In my childhood, I was very close to mom and even after I was a teenager and young adult, she has done a lot to help me. After her death, I was really struggling with life, but had support of my dad and girlfriend. GF wanted me to be stereotypical, confident male so she ditched me eventually and once again, I've found myself aimless.

It was my friend from high school I've once met again by accident who had helped me the most in becoming almost functional adult. She wasn't giving me expectations, she gave me understanding and reassurance. Even though, much like all friendships in my life, this one eventually died when both of us got "busy with life" (and other people), I still consider her to play pivotal role in my life. She was my lifeline, when world was crushing me down and I was afraid of it. Helped me to find a decent job, even. It was at this job when I've met another woman, whom I had a relationship with for two years. She taught me many things and greatly improved my self-confidence. I thought we'll end up marrying, but she didn't want to leave her husband (plot twist!). I've ended this relationship, ironically thanks to the fact that she made me believe that I'll manage fine on my own. Then I've met my wife, who pushed me to do things I've never imagined I'll ever do - pursue career in field of my interest, buy my own flat (well, it is a mortgage, but better than renting still) have family of my own.

We have two young girls, 2 and 5 years old. The older one has been recently diagnosed with Asperger's. She is struggling in many areas I did as a kid and I try to guide her and encourage, make the world less scary, but it isn't easy. I wasn't diagnosed in childhood, never had any professional help at young age, I was "flying blind" and retrospectively, it was a nightmare. A lot of people (including therapist) say that it's good that I am a parent with AS, as it will help me understand her perspective better and help her deal with situations in life. But I am not convinced. We are not the same - we think differently, apart. I am doing my best, but it is also all new to me. After all, I was never that well adapted myself, so it is not like I am an expert to give her any solid advice based on first hand experiences...

My dad is also on the spectrum, although never diagnosed. He is, in a lot of ways, like me. Women "carried" him all his life. First, his parents, then his wife (my mom). After her death, he was left with an adult daughter who moved out of the house soon after and me, I was during second year of my engineering studies. He is a responsible, hard working guy, but completely hopeless when it comes to arranging things in his life. Cares about personal hygiene, but his flat is a mess. I still take care of his bills for him. Every time he needs to deal with some kind of formal affairs, I need to help him.

I think the main takeaway is that you should push your kid towards independence and believe that he can do more than he, himself, believes he can. It is also good to help him built a sort of social network of people who can support him a bit in certain things. Also remember that even if you are on the spectrum, he may face completely different challenges than you do and there will be times where you will be struggling to deal with it, too.

KMCIURA thank you this has been a bit of ground-breaking post for me and I had a sleepless night thinking of all the women in the world who could like my son, who are able to fill out forms, handle money and deal with employers, retailers and government, but who have been unable to find a life partner due to not being classically beautiful, being in a wheelchair or even being tall (because tall men don't seek out equally tall women) I can also imagine him "taking the idea and running with it", nature being what it is, and becoming more proactive and engaged than he currently appears to be.

I am sorry you have had to go through all these things and for the loss of your mother. It does sound like you have had some success though and you sound admirably realistic. Everyone has something to offer in a relationship.