You know those movies where the family gets dropped off at what they think is going to be some amazing holiday destination but instead they’re in the middle of nowhere with no one to ask for help? That is exactly what it is like when your child with autism becomes an adult.
My daughter turned 18 several years ago and while I don’t feel like we’re on a completely deserted island anymore, there still aren’t many people here. Definitely no travel guide in sight. I’ve learned the hard way that anything there is to learn about autism and adulthood will not be found in a book or come from that shiny brochure at your local social services agency. You will have to figure it out yourself or talk to other parents who’ve been there.
Because of this I’m going to try to summarize all you need to do, know and ask for once your child with autism turns 18. I’ll be your travel guide for the next five minutes or so. Try to hang on, maybe breathe into the paper bag in front of your seat.
- School services – There will no longer be a structure of teachers/support staff as there was in the education system. If you live in an area where they offer educational services to special education students over the age of 18 you will have some people to talk to about your child’s continuing education but it won’t be like it used to be. Adult services vary greatly from district to district and there is very little oversight on the hours and services they offer. Familiarize yourself with nearby programs and don’t be afraid to push for the one that fits your son or daughter best. Those fights you had for speech and OT services in early elementary? I’m really sorry but you might need to have them over again.
- Local services – The county you live in will be your new “school district.” Any daily living services your child with autism needs will come through your area’s social services. Even though they are most likely still living under your roof, think of your child’s needs as independent of yours. What do they need on a daily basis? These are all of the things you will need to apply for through social services. Staff to help with daily tasks, money for groceries, transportation, apply for it all now so you have it when you need it.
- Social security – Apply for social security right away. This probably should have been number one because of how important this step is. The previous steps were more shocking to me – the new way of life that I had to get used to all by myself, sitting in small offices with beige walls and intake staff. When you do apply for social security think again of your child as independent from you. What do they need as far as income? What will they realistically be able to earn in the near future? Think of this step as creating their safety net. Leave your pride at the door but bring all your documents and save everything! As many times as you submit your paperwork, they will say they didn’t receive it an equal number of times.
- Guardianship – Decide what you would like to do for guardianship for your child with autism. I don’t know a single parent who can say this isn’t an emotional decision. It’s just another one of the many things we have to do as special needs parents to protect our children. A lot of parents will immediately say their adult children need a full guardian but full guardianship is difficult to obtain. Most experts in the field will tell you that partial guardianship is more attainable. Laws differ by state but you can file for a guardianship hearing with your county without legal representation. An attorney can offer valuable advice so may be worth a consult but if you can’t afford one there is plenty of information online on most county court websites. Many apply for partial guardianship of financial and medical decisions. This allows the guardian to handle all medical care and make financial decisions. If your son or daughter makes questionable financial decision on their own they cannot be held responsible once they have a guardian over their financial affairs.
- Living arrangements – A decision that doesn’t need to be made as soon as your child with autism turns 18 but may come up in the years ahead is living arrangements. This is another one that varies greatly from state to state. Some have decent options for independent or semi-independent living. Some provide vouchers for home staff. Some lump our kids in with any adult who is unable to be independent for any reason, resulting in little to no autism-specific options. I’d love to say there is a wealth of resources out there but I’ve spent most of my daughter’s 20s hoping an oasis of autism living opportunities are going to fall out of the sky into our community. There’s a huge part of me that wants to create something but there is an even larger part of me that is tired. If you’re an autism parent reading this I’m sure you understand the “tired” that no amount of sleep can fix.
I’m sorry I can’t wrap this post up with sunshine and rainbows and concrete answers. The truth of the matter is that there is a lot of work to be done when it comes to services for our kids as they become adults – just as there was a lot of work to be done when they began school.
My daughter was among the kids diagnosed at the beginning of the rise in autism cases over 20 years ago and I’ve seen amazing changes in school services since then. Autism parents get things done and I have no doubt we will rally and turn adult special services around for our kids as well. One of these days that autism oasis might just be built, it’s just going to take all of us to make it happen.