[ciaranm]

Hey, just want to say that I've watched my own parents handle this with my youngest brother (now 13). It's incredibly difficult and draining both physically and emotionally. I can't imagine how tough it is first hand as a parent.

[awakeasleep]

Does it at least improve as they get older?

[jasonlotito]

Not the OP, but I can answer this.

It depends. Autism is a spectrum, not a single condition. I have two children with autism, and they are different. The younger one is much more self-sufficient than the older one. Has it gotten easier? With the younger one? Yes. With the older one? No.

The reasons are many. Both are still in diapers at 8 and 9 (soon to be 10), though the 8-year-old is getting potty trained. We are hopeful. The older one will probably never be out of diapers. The older one is also fairly big for his age. He always has been. He's also strong, does not know his own strength, and almost the height of my wife. She cannot lift him. Luckily, he's an affectionate child, so usually he just wants hugs or to sit on laps and be tickled. We have a stroller for him so we can take him places as he has low-tone muscles. Both are a flight risk (though the younger one is better now). The older one would wander into the road without a care.

But it's hard. Really hard.

And as they get older, there will be less and less support. At some point, we will not be able to properly care for him. However, society for the most part ignores this (despite the US doing a very good job compared to other nations).

I love my children. I love that they are happy. They smile, they laugh, and that's all I want for them for their lives. Your priorities as a parent quickly changes when you learn this. Instead of hoping they have a good job and are successful, you reevaluate your hopes and aspirations for them and you. You realize that success isn't money or a startup, it's happiness. If my older child is happy for the rest of his life, how can I feel anything less than joy. I know people far more "successful" and far more "wealthy" and "doing what they love" and yet, they won't ever be as happy as my sons are.

But it's hard. It's just hard because everything is harder than it should be. Everything takes longer, everything requires compromise, and not everything is available to you.

The thing to remember is that my story is mine alone. Autism is a spectrum, and some will have it much easier. I love my two boys, and I would do anything for them, and all I want is for them to be happy.

But it's hard.

[kraig911]

I still remember when my daughter got assessed and the psychiatrist basically said. I know you probably have hopes and dreams for your daughter. But you need to put those away and forget them. That she would never be able to talk etc. My daughter can now talk some, I think she understands more than she lets on. We're doing great with potty training fortunately what we have are severe behavioral problems and communication. (She refuses to wear clothes, hits and bites, and basically screams all the time)

It's just harder than most can possibly imagine. When I look at her I see both my hopes and dreams from when I first held her still. The worst is seeing parents and neurotypical children together. I'm both happy for them but I get so envious. As time goes on too I'm finding my extended family invites us to less and less.

[mercer]

As a high-functioning, doggedly independent diagnosed autist: thanks a ton for your efforts. My parents did the best they could, and I'm uncomfortably aware of how much effort it must have taken at times to deal with my particulars. They never quite knew what they were dealing with, but they gave me unconditional love and support, and ultimately that's what mattered most, even if they failed at understanding my particular needs/quirks. I'm sure I gave them a hard time much of the time.

Other than that I'd suggest looking into health care in other western nations. I'm being vague because I don't know your particulars, but so far I've been quite impressed by the support provided in Europe for people on the spectrum. It's not ideal, but it's affordable and the quality seems alright so far.

If there's nothing in particular keeping you in one place, and if you can find work elsewhere, it could be worth exploring expat life if you have one or more autistic children. And it could be great for yourself too.

[jasonlotito]

Thank you. We already moved from Canada to the US precisely because of the support issue. While it could always be better, I should make it clear that Pennsylvania has been wonderful in its support so far.

However, you make a good point, and yes, we have no fear of moving as needed. Whatever it takes.

[ciaranm]

It's different, certainly. I'm talking second hand about someone so I don't want to attribute too much of what are my observations as truth - but he's definitely more aware of when he's struggling and can articulate that better compared with when he was younger. He's also at a secondary school with very small class sizes that's set up to help with cases like his, which helps.

He does have other health issues that make day to day life difficult in other ways, so I don't want to say everything's rosy. Still lots of hard work for my parents to manage.

[mercer]

It can be tough to find the niche to thrive in, but I've seen it work quite a few times. So at least it's possible. Sometimes it does require a degree of permanent care by parents/guardians, but some degree of autonomy and even 'thriving' is possible. Don't lose hope!

[PebblesRox]

I recommend the podcast Autastic for anyone interested in the topics of autism and caring for autistic family members. It’s two comedians, one whose brother and one whose son has autism. https://www.acast.com/autasticacomediansguidetolivingwithaut...

[notacoward]

Often, the burden seems to shift from providing direct care to struggling with the financial and legal issues of institutional care. It's awful, but I've seen too many friends travel too similar paths to believe it's not common. :(