File this post under “plan for the best but prepare for the worst.” And although what I’m going to say can apply to Autistic adults or parents of Autistic adults, it is directed primarily at parents of Autistic children. There is something very important you need to make sure you are doing for your child and that is saving every scrap of their disability documentation.
When I say we are hoping for the best, what that mean is that your child develops and grows and at the same time our society develops and grows and when your child attains adulthood s/he has communication skills (whether spoken, sign language, typed, or whatever) and society has acceptance of those who are different and together your child and an employer recognize what your child could offer and work together to make it happen. Or your child starts their own business and makes it happen. Or someone else starts a business centered around what your child can do and together they make it happen.
These are all possibilities, no matter what your child’s pattern of skills and struggles ends up looking like when s/he grows up. This is the best we are all hoping for. You want your child to be sustainably employed and self-supporting. I want your child to be sustainably employed and self-supporting. This is the future we are all fighting towards and hoping for.
But . . . the unemployment rates for Autistic adults are kind of grim. I’ve seen everything from 70% to 85% but nothing much lower than that. For comparison, in the worst year of the Great Depression (1933) the unemployment rate was around 25%. Autistic adults face a grim economic depression. And the pinch hits everyone. If you really want to be depressed, I can link you to lots of articles about Autistic adults with university degrees who can’t find work. Adults with graduate-level university degrees who can’t find work. It’s really hard out there for Autistic adults. An informal discussion four years ago with two experts, Dr. Volkmar and Dr. Wiesner, provided lots of optimism but few concrete solutions or numerical data. Everyone agrees it’s difficult. Everyone agrees that things are getting better. No one seems to know how much better or how fast or what to do about it all.
So here is my advice to you: save every scrap of documentation. Start today. Save what you have. Send off for copies of what you don’t have. Develop an efficient filing system for your documents. Scan your documents and put them on an external drive. Put them on two external drives and store one in a safe deposit box. Open a Gmail account just for the scanned documents and mail them all to yourself in emails with search-friendly notes in them so you can find what you need easily. Store them with a “smoking crater” mentality — that is to say, if you returned home from the grocery store one day to find a smoking crater where your home used to be, where are your child’s documents?
What should you save? Every scrap. Save all their medical records. Save every teacher’s comment. Save every therapist’s report. Save everything that documents your child’s condition. If your child is currently receiving SSI, don’t assume that the verifying documents you gave to the SSA still exist. They don’t. You need to save copies of every one of those documents PLUS all the social security documents surrounding your child’s SSI case.
If your child is not receiving SSI but is eligible, those documents will help your child get SSI. If your child grows up and is unable to work, those documents will help your child get SSI in order to help them live independently or help pay for a group home or other living arrangement. If one or both of your child’s parents die, become disabled, or retire, your child is eligible for Adult Child SSDI benefits. Even if these benefits add up to the same amount as SSI, the rules are less draconian, the medical coverage is better, and there are so many reasons your child will be better provided for on SSDI than on SSI . . . but you need to have documentation to show that your child’s disabling condition has been present since at least age 21. It does not matter that your child has a diagnosis for a condition that is known to be something a person is born with. I know so many people who have conditions that people can only have if they were born with them (not just autism) but they still had to fight to get Adult Child benefits and provide mountains of documentation and go before a judge to prove that they had been disabled since childhood. Save every scrap of documentation because your child might need it some day in order to prove that they qualify for benefits that can make the difference between life and death for a disabled adult.
If your child grows up to be on SSI disability benefits as an adult, they might want to take advantage of the new ABLE act (Achieving a Better Life Experience) that allows a higher amount of resources to those on SSI than the standard $2000, in order to provide for certain life expenses such as housing, transportation, and education. To be eligible for ABLE, your child will need documentation to prove that their disability began before age 26. Again, there must be documentation and the documentation must be explicit and you must expect that you and your adult child will still have to “do battle” with the government to get them to accept your proof and give your child the benefits they deserve. The documentation will have to show that the condition (in this case, autism) existed before age 26 and that it was disabling to your child before that date.
So plan now. Save every scrap of documentation you have. Get copies of every scrap you don’t have. Archive them, store them, duplicate them, make sure they are safe because they could turn out to make the difference in your child’s future between a life of comfort and needs met versus a life of struggle, crushing poverty, and possibly even an early death because of too many needs not met. Save every scrap. They are more valuable than gold. Hope for the best, but don’t fail to plan for the worst. Paperwork can be overwhelming for anyone, but it is crucial that you save every scrap of your child’s paperwork starting right now. Just in case.