Friday, September 16, 2016

When They Grow Up

An autism diagnosis for your child is devastating, but it comes with an element of hope. There are autistic characters on TV using their savant skills to solve crimes or crack computers. Programs hawk incredible changes. Then there is all that research. Your child will be in school until he's in his twenties, by then there will be a solution right? Everything will be just fine.

There are many possible futures, but unfortunately this is one that is not uncommon.

Your child has become a man or a woman, most likely a man, and things are not fine. They're not fine at all. It's not like what they show on TV. All that research worked great on mice but didn't do much for human beings. And those programs that promised to make your son look and act normal, they didn't. His spoken language has the syntax of a two year old and he has regular meltdowns, pinching or sinking his teeth into the nearest person who can't duck or get away in time. Often that person is you. Now what do you do?”

Okay, you can take time for a good cry, but after that you need to get busy. Services are usually provided by medicaid waiver. That means doing lots of paper work. You have to do it. Get on every list you can. Even if you don't need the services, the need may sneak up on you. If there's a waiting for housing or respite, even if it is years long, make sure you get on it too. Eventually you will reach the top.

Cling to whomever his willing to help, whether it is your family, your friends, or your religious institution.


Most of all, take care of yourself. You are in this for the long haul. Perhaps there will be a cure and if that happens, it will be wonderful. But you have to cope with the present. Remember to sleep. Remember to eat. Find something you love to do and do it. Be checked for high blood presure. It happens to parents of individual with autism --- a lot. The last thing you need is a heart attavk or a stroke. And believe you can do it. You can.

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