Coming of Age and Autism: Planning Beyond 21

Posted on

21 is supposed to be a magical number.  One becomes a "legal" adult, showing once and for all that the person is strong, independent, and able to take care of themselves.  So, apart from adult children returning to the nest, everything should be perfect for those who come of age.  Unless you are a child with Autism.

Autism services have come a long way in just the three short years I have been immersed in the world of the Spectrum.  Services are available at many school districts for children from pre-school until age 18.  Some Universities provide services for their students with special needs, and indeed State schools are subject to the same American Disabilities Act legislation as Government.  But once our children leave the ivory towers of education, they are thrust into the streets of daily life.  The services that were once so common, like occupational therapy, sensory therapy, speech therapy, etc. are no longer being offered, because the child has become an adult and is expected to fend for themselves.  The problem is, often times they cannot.

So this brings up a whole slew of different issues that need to be addressed.  What is to happen with an adult with Autism?  How are they to live?  How can parents manage their care, both while they are living and when they have passed on?

First, it is very important to become a legal guardian of your child, and this should happen by the time they are 18.  It may seem incredulous that you would be denied that right as a biological parent, but in the eyes of the law you lose all responsibility of your child when they turn 18.  If they cannot be trusted to make their own decisions with discernment, do it.  It will save you a lot of headaches in the future.

Second, if your child cannot be trusted in matters of finances, get Power of Attorney.  Family members can quickly amass credit card debt, even without a job, because they are promised funds that they would otherwise not have, and have no chance of paying back.  This becomes a serious risk to your child's financial health.  It also makes it more likely that they could lose their identity through various schemes, if you are not consulted first.

Third, as soon as you are able, set up a trust fund for your child as a secondary, supplementary income, and pay into it with anything you can get.  Often times when family members ask about what to get for gifts for holidays or special occasions, they would be just as happy to donate what they can to the trust fund.  The fund can make sure your child has necessary essentials when you have passed on.

Fourth, fight to have Autism recognized as a diagnosis.  I'm not necessarily talking about guaranteeing costs for therapies and the like, but rather guaranteeing that the diagnosis will be recognized as a legitimate medical condition.  It can pave the way for future coverage as it becomes available to adults, and with the new Healthcare Law in place, it cannot preclude them from coverage because of an existing condition.

Five, look for sustainable techniques for helping your child with Autism.  There are lots of support services that work for a while, but may not be sustainable for the long term.  For instance, having Autism Little League is great to help them learn game skills and provide social interaction, but what happens when they are no longer old enough for Little League?  You may want to think about what the next path will be.

As for therapy, learn as much as you can from your therapists, special education teachers, psychologists, and anyone else who works with your child, so you can continue the work at home.  And, depending on where your child is on the Autism Spectrum, think about teaching your child what they need to do themselves to give them some independence.

And lastly, all your efforts should be geared not just to surviving Autism, but helping your child become a productive member of society.  I am a firm believer that every child with Autism (with a few exceptions) can provide something to this world that will earn them a place in society.  We just need to help them realize what that thing is.  For now, my son is an excellent software usability test, as I can quickly determine what software is easy to use and what isn't based on his attention span and desire to use the app.

Planning beyond each day for a parent with a child on the Spectrum is not something that comes easy.  The day to day routine can become so overwhelming it fills your whole world, and even thinking to the weekend can seem overwhelming.  But these long term plans need to be made, with some flexibility built in to allow for your child's development as their brain learns how to manage the condition.  The better the path you start when they are young, the more likely they are to succeed when they get older.  Much like planning the education for your neuro-typical child, it needs to be done for your child with Autism as well.  It will be hard, as Autism continues to baffle everyone studying the condition, but it needs to be done.

So hold fast, and know you are not alone.