When the bus no longer comes...

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...what is my son going to do with his life? He's 5. ASD. He doesn't speak beyond a few words. After he's out of the system, at age 22, what will happen? If my wife and I take care of him, what will he do all day? What happens when we get old? When we are no longer here, who will take care of him? I don't want his sister to devote her life to this. She's 8 years older than him. And what happens when no one is there for him anymore? How will he die, if he gets old? Will he even know what is happening to him?

I feel heartbroken.

A lot of autism's behaviors and characteristics fade over the childhood years; some to the point of becoming manageable by autists themselves. Remember that autism is a neurodevelopmental delay disorder; life has a way of catching up to every individual's needs. Autistic children become autistic teens who can amaze you with their abilities. This doesn't erase the core deficits, but it does improve the ability to accommodate them well. As your son ages, as with all children, find ways to give him the skills he will need for a lifetime (self-care, cooking, cleaning, learning to learn, applying for jobs, finding a partner, dating, personal finance management and such). Make these skills a fun game. Look at creating a "Special Needs Trust Fund" for your son if you haven't already started one. Begin conversations with your son about what he would like to do professionally when he is older. Amongst his special interests, cultivate those that have professional advantages.

Most of all, realize that autists are survivors.

Thank you so much for your reply. My little boy is not high functioning. We have no conversations. He can say "I wann mommy" or "I want the iPad" or "bathroom", but that is about all. I can tickle him and make him laugh. I would be thrilled if we could ever talk. He has no friends, and will not sit still and tries to "escape" from the house. He doesn't have relationships, not even with his grandparents. But he's a happy, beautiful little boy who I love so much, even if he doesn't love me back. If he every accomplished ANY of what you've described I would be overjoyed. Dating? Living alone? I would be shocked if he ever passed special-needs kindergarten. I am not trying to sell him short, I want the world for him.

Completely understandable. But, improvements aren't unusual. I know of a young woman who was diagnosed and treated for speech deficits and delays when she was a child. She completed three IQ tests (each with a score of 72, though the proctors said that they believed her "real" IQ was at or below 70) when she attended a business college. The college welcomed her but "broke the bad news" to her parents about the likelihood that she wouldn't complete her courses, let alone graduate. She graduated nonetheless and, despite her family believing now that she might have been autistic all along, she now works fulltime with a financial services company. She also earned an Associate Degree in food management at another local college. At about age 30 years, she is vigorously looking to rent her first apartment. She still has anxiety issues and obsessive compulsions, but she manages with them just fine ... most of the time.

Good luck in any case. Your described attention to your son's continued well being is already having its effects in his life. Keep it up and never let him down.

This is why its important to join your local Autism advocacy group (or a more general disabilities advocacy group) and start to petition the government to make supporting adults with disabilities more of a priority.

We've been shamed into staying silent for too long. There is a housing and support crisis for autistic adults. It got a LOT worse during the crash of 2008, and as our economy has recovered, the services failed to recover with it.

While many of us will grow up to be just fine living independently (And its true you can't tell if your 5 year old will be one of us who are) there will be a certain number of autistic adults who need support in order to live.

Now is the time to start pushing your senators to address this crisis. Now is the time to mobilize your friends, family and spiritual community to work towards better services for all.

Hopefully, by the time your son is grown, he will have options for housing and work support.

My apologies for the bias a lot of us have towards believing every autistic is a person who is capable of living independently. We need to understand that some of us simply are not going to do that. They are an important part of our community too. Although it is true that its less likely that they will be writing messages on wrongplanet (but that does happen to. Some people who need a lot of supports are very able when it comes to typing.)

On the other hand, you need to check your assumptions, too. What is this thing about not passing special-needs kindergarten??? Was that glib or do you really not know how special needs classes work? There is no pass or no pass with special education. You meet with a team that decides on specialized goals for your son to work on. If he doesn't meet those goals, they simply make new goals the next year. He will go to 1st grade, no matter how he performs in special needs kindergarten. His ability level may affect how much he is integrated into a typical 1st grade class. If you weren't being glib, but really are confused, please come back and ask more questions. I hate to have a parent confused about something so basic to his son's care.

I wish the best for you and your son.