You need to figure out what services are available for the surviving spouse to work full time. You need to figure out if you qualify for a Medicaid waiver now (called Katie Beckett waivers in some states). Even if Medicaid has a long wait list, get on the list. And push for what other services are available. My kid has been on the Medicaid waitlist for 14 years now. But in the meantime, we get a direct support professional in our home for 22 hours a week to cover after school so we can work. There is usually something to help keep you in the work force.
Also, accept that a high support kid isn’t going to get “perfect” services but you still have to work. You cannot afford to be precious about making sure they have the perfect amount of ABA, ST, OT, etc. The truth is this stuff doesn’t typically make a huge difference for high support needs kids no matter what all the doctors and therapists tell you. If they need care for life, you likely need to care more about savings than the very incremental changes that might come from intense therapies.
Find every type of respite care you can. For example, churches often run some level of respite through programs like Buddy Breaks. Again, you don’t have time to worry about the touch of religion your kid might hear if that isn’t your thing — take the break. I. Our case, our kid goes once a month for three hours on a Saturday. Find out if your kid can attend weeklong overnight camps through your state autism society — and send them.
Call your local autism society and talk to a parent navigator (or whatever help they have). If your child has intellectual disability as well, talk to your local ARC about resources.
All services are state based so don’t plan to move to another state for family support unless you carefully weigh the pros and cons d cons of starting over on waitlists, etc. And don’t overestimate how much family can help. They might all say “sure, we will help” when a kid is 4 and then feel entirely different if you have major behavioral issues with a 10 year old or they have to bathe a 16 year old girl.
If you are hopefully holding out on getting an ID diagnosis, let this go. Getting this diagnosis may help you get more services. Of course, I understand your kid could be high IQ and have high needs.