Autism and Adulthood – It Doesn’t End at 18

I’ve seen several comments lately about services for people with autism after they become adults. It seems that many have the idea that once a child reaches the age of adulthood, the autism goes away and services are no longer needed. It is a terrifying reality.

When children are diagnosed, schools (or early intervention programs, depending on the age of the child) are responsible for providing the child with the services they need. The speech therapy, occupational therapy – whatever the team decides they need are arranged and usually provided by the school district. Parents can work, knowing their child is safe (usually!) at school.

But then. the child turns 18. In some states, the schools still have to provide services for that child until the age of 22. I know some families have taken advantage of this in my area because their child enjoyed school. For us, finishing school was a milestone. Casey participated in her class graduation, but Rob didn’t. They both received a diploma, not a certificate of attendance. (Thanks to hardworking teachers!! 🙂 )

When Casey was a sophomore, we began to talk about what she would do after graduation. Our county board of DD had a sheltered workshop and I knew many of the people who worked there. She visited a few times and seemed to like it. In her junior year, she went to the workshop on Fridays and the high school the rest of the week for the first semester and went two days a week the second semester.

Her senior year, she started at both places. The first semester, she went to school Monday, Wednesday and Friday and the workshop Tuesday and Thursday. The second semester, we switched and she was at the workshop more. When she graduated, she began attending the workshop full time.

Rob didn’t need as much transitioning because he was already familiar with Hopewell from Casey being there. He started in the second semester of his junior year and we followed the same schedule as Casey his senior year. When he graduated, he went with Casey full time to the workshop.

They both enjoyed the opportunities there and even made a little money doing piecework. Neither of them understood the idea of working for a paycheck and despite my best efforts, the check they got never meant money to them. Money (besides 3 quarters every morning!) still means little to them. They both know they need it to buy what they want, but have no idea how to get it (besides Mom’s purse! 🙂 )

We are lucky. There are several day habs in my area that provide day services to adults with special needs. I haven’t checked into the other ones, as the kids are happy where they are. Some offer small jobs where the adults can earn money. We also have a county board that does their best to make sure adults with special needs are taken care of and their wants and needs fulfilled.

Again, I am lucky. Casey and Rob have no desire for a job. So many adults with autism want a job – to have a group of friends – to make their own money – to live on their own. Casey and Rob do not have these desires. To be happy, they want to see people they love. Go for hikes with Tracie. Go shopping. Volunteer. Things that are easy for me (right now, anyway!) to provide.

But for many adults with autism, obtaining what they need is a bigger fight than getting services in school. Social security benefits can be difficult to get. Guardianship cases have to be decided. Finding a place to live if living with family is no longer possible. Finding someone to stay with the adult while families work or need respite is hard. (My parents and Tracie are my kids’ respite providers – I worry what will happen when my parents are no longer able to help. Finding people you can trust to be in your home with your child is scary as hell.) Trying to get waiver services. This list goes on and on and often, there is no one to help the family get through the process. (We have a service and support person through our county board of DD).

Sometimes, the problem isn’t money, but that there are simply no services available. There is a desperate need for providers, both in residential centers and home based. It takes a special type of person to work with people with disabilities. Many think they can and find out quickly that they can’t handle it. I often think I should get my certificate to provide services, but I’m not sure I can handle it. When I worked in the preschool for children with autism, there were many days that I came home exhausted and had to deal with autism at home, too. I loved my job and hated when it ended, but there were some tough days. I’m just not sure I want to do that again.

Some families are just looking for a place for their loved one while the family is at work. They don’t care about money – they just need a safe place. Not working is rarely an option for most families, especially if the adult with autism is not getting any disability benefits. Fighting for school services is nothing like arguing with Social Security that your child is an adult and that the autism did not go away. You have to prove it. You have to find doctor reports from when your child was much younger. If you are just starting on this autism journey, please, do yourself a favor and start a file. Save everything – you will need it someday!

My advice is to get help from your county board of developmental disabilities. If you don’t have one, contact your state board. Start making plans while your child is still in high school and you have that team to help you search for services. Find a lawyer to help with guardianship. Get on waiting lists for services, even if you aren’t sure you will need them. I know the last thing you want to do is have something else to deal with. You are tired. You are stressed. You are just done with autism.

But, if you don’t start planning early, your child will graduate and suddenly, you have nothing ready. You still have to work and you have no one to stay with your adult child. Trust me – a little stress now is better than a huge stress later. Get help before you need it. Look for places for your child to go. Ask other parents what they do or where they got help. (Often, other local families are your best source of information – a sort of “been there, done that” group!)

Although the future scares me a lot, I try not to dwell on it. Instead, I try to be more like Casey and Rob. Happy with simple things. Laughing for no reason. Being honest. Getting excited about Santa and the Easter Bunny. Pure joy at seeing their favorite people. Enjoying helping other people. Adults with autism can bring a special magic to the life of anyone they are around.