Friday, June 7, 2013

What Must You Do Before Your Child With Autism Grows Up?

No one wants their child, ever, to become a ward of the state.  Aren't families supposed to take care of their own?  Well, things don't always happen the way we think they will.  You sometimes think you've done the right thing and it turns out-in a big way-that you didn't.

Do you have a child with autism? If so, have you thought - really thought about - that day when your child turns the magic age where adulthood legally begins where you live?

Maybe you aren't a parent.  You could be a concerned friend. Or a grandparent.  Or a grown sibling.  We are in an epidemic of autism, and if you are reading this, you've been touched by it.

You don't need to tell me that you're in the middle of a war zone. You already know that.   In the middle of the war, you may feel you only have the energy to think about today.  And here I am, a stranger to you, asking you to take some time anyway.  Because I've learned the importance of asking these questions the hard way.  Learn from my mistakes.

You, the caregiver of this child, MUST ask yourself these questions:

Will my child be able to live on his/her own as an adult?  (From here on in I will use "he" to mean "he or she".) 

If not, will he have a place to live?

Will he be able to drive or use mass transit?

Will he be able to pay bills?  

Will he be able to make decisions about his health?  His finances?

Or will he need help?  If so, how much help?  Some guidance?  Or someone doing all of the above for him?

Will he need a guardian? (In New York, where I live, it can be a lot easier to get guardianship for a minor, someone under 18, than if that person has already reached age 18). Will he need people in different legal roles to help him?  If so, who are you depending on?  And what do they think about you depending on them to do it?  Are they OK with it?  Will they respect your wishes?

Do you have other children you expect to step in and care for your adult child?  If so, are they the right people?  (Answer honesty.  This is not a quiz and there is no one right or wrong answer.)

Perhaps your child is young, and you've just gotten the diagnosis.  Please, put this on your calendar for a few years from now:  "Time to Plan".  Don't wait until your child is an adult to think about it.  You know that saying "they grow up so fast?"  Guess what.  

They grow up so fast.

So who elected me to ask you these questions?  Here are my qualifications: I am the sister in law of an adult with autism.  He's in his 50's. His parents raised him without supports, and no one guided them to make the decisions they needed to make.  So they never made them.  Now, he may be paying the price.  And we, his siblings and inlaws, have been left with planning his future because his ability to do so is impaired. (That isn't true for everyone wth autism, by the way.  It's what is called a "spectrum" disorder, and every person with autism is an individual functioning at a level specific to them.  This, though, is my brother in law's situation.) 

We've been helping with this for a few years, and the need is now becoming urgent.  I may blog about that more next week.

So, once again, I ask, if a child with autism depends on you:

Ask the hard questions. If you have already, bravo!  

The people in your child's future thank you.


  1. I'd elect you anytime Alana. Alot of this I have thought about since my autistic son is now 16. BUT one very good point I did not think about was how changing a guardianship/etc plan might alter at age 18. Time for me to make some local inquiries. Many thanks.

    1. With the caution that I am not a lawyer or trained in any law field: There's some good information online I found rather quickly for your state but it's always good to seek advice from people who really know. And I see, in your state, that children 16 and over have the right to consent to certain medical treatments. You may need to take some action in that area, too. So it's good that you are making these inquiries now. Good luck!

  2. This is, indeed, an issue.
    I have helped families develop plans (trusts) to try to make sure that their child will be safe and comfortable after they are gone. (And, that their other children can help- but not be burdened- by their sibling.)
    It doesn't take much money- consider it the equivalent of putting money away for your child's college education...

    1. A good point, indeed. If I helped even one family today with my post, I will be happy. You are a marvel, Roy. Is there anything you can't do? We need to try to find a way to clone you. No, wait, I'm sure you will develop a way to do that one day.

  3. "No one wants their child, ever, to become a ward of the state. Aren't families supposed to take care of their own?"

    As an Englishman reading your post from France I was smacked right between the eyes by that statement.

    Autism has never been tackled in France by government, the health service or public opinion. The French just don't care about it and the resources devoted to it are minute compared to what is done in other European countries.

    Why? Because the French are not used to dealing alone with health issues and conditions, be they of physical or mental origin, because France's generous state health benefit system pays a good deal of it for them. That's a good thing.

    But the other side of that coin is when it comes to pathologies that are not considered to be of any real importance.

    And it's then that you see that the notion of dealing with autism is alien to the French. If the state can't fix it, they ignore it.

    I wish all the best to your brother-in-law and all those other sufferers of autism who are being left on the side of the road because of indifference.

    1. My brother in law's "Medicaid Service Coordinator" (Medicaid is a federal system of health insurance for those requiring financial assistance,which someone with a disability needs in order to get practically any service-and it varies from state to state within our country)says that our brother in law is one of the few disabled individuals she works with that has interested family members. Some of these people have no families at all. Very sad situation. Sad situation in France, too. I'll be blogging more about our situation next week.

  4. Very interesting blog. I work in training companion dogs for children with autism. It's always our hope that the dog will assist in the child developing independence and social skills that will help them later in life. Our eldest child we have placed a dog with is now 16, so we will start to see the progress. It's a tough road for these families. I know we help with short term benifits, lets hope the long term are just a successful!

    1. Thank you for working with these families. I would love to know more about this companion dog program. How I wish there were programs for my brother in law when he was younger. But back in the 1960's, when he was growing up, there was next to nothing, and there weren't even laws guaranteeing him a free, appropriate public education.


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