I know everyone gets older. But not everyone does it the same. Some people seem to grow up slower. And some seem to get older fast. And some of us do both. Autism is not usually considered something that gets worse once you’re like 5yr. (Rett syndrome is different.) Cerebral palsy is also not called somethings that gets worse. They are supposed to be stable with only getting better. Seizures to.
But there really are not many studies of adults. I know of only one of cerebral palsy and aging. And it says that on average 25% of those who could walk eventually lose the ability. And from the things I’ve seen from other adults with either ASD or CP most people feel aging early, from 25-40.
Here’s my experience. Over the last few years my body has definitely feel different. I have a harder time walking or holding stuff. My muscles are more out of control. They may decide to move, or stop working. I get more pain and tired more fast. It takes me longer to both process action and do it. My sensory overload is worst. And maybe because of seizures, I have a worst memory, not that it was good. (I’m not complaining, these are just facts. I spend more time on happy thinks. But sometimes neurotypicals put negative feelings when I use facts with no feeling.)
But the funny part is that right now I am more independent than ever. With the help of Dynavox compass and my service dog I can do more things. The AAC is more than just a way to communicate. It has lists, schedules, videos, timers, and more. It breaks down things into small parts. I use it to figure out the day, keep on track, and even to figure out what to do in new situations using the social stories and other supports. Plus it has practice conversations. And Allie can steady me, lead me home, stop self harm, calm down anxiety, and even watch my blood sugar and heart rate, oh and knows when I will have a seizure. In addition I have a cane, and a AbleNet blue 2 switch. And because AAC is pictures based for me, it’s easier to understand and see when my eyes can’t focus enough for words. And I have learned a lot of words from it, all of which help me communicate how I feel and what I need. So now that I need it most I’m able to get more support. Oh and yes I’m sure my meds help to, at least for breathing and OCD.
It’s funny because in a way it’s like my body decided to be old now that my mind has been set free. Like it said ok I’ve been working overtime all these years to cover for you, now it’s your turn to cover for me. (I got that phrase from a person who works)
Anyway the point is that even though they are not getting worse (so they say), most start to feel it worse. The effects on the body, and mind sometimes, can mean they get tired faster than a non-disabled persons’. Children who don’t have any pain may need to be prepared to deal with pain as they get older. Or those can who can walk should be monitored as they age for any changes in order to prepare for a time they may need more assistance such as a cane. Loved ones may need to keep in mind that as we get older it may look like we are worse because our bodies/minds aren’t able to work so hard for the same amount of time. We need to consider things to help us continue living best we can, and to cope with the changes- especially us that have hard time understanding things or adjusting to change. Don’t put down a adult child with differences for having problems, it’s not nice to say they are not trying simply because they used to be able to do a skill better. They can be trying the best and you’re making them feel worse about something they already feel bad about. This happens a lot to adults on the spectrum, and those who had milder CP as people think we’re being attention seeking or asking for pity party or being manipulative (some may, but most aren’t). Nobody prepares us or our families for aging. Mostly because they don’t know since most of the information is for kids.