Planning for an Autistic Child's Adult Years
Rearing a child on the spectrum is difficult enough. But planning for that child's adult years may be even harder to manage. If you're worried about that challenge, you're probably right to be: As with other issues related to the spectrum disorder – treatment, intervention – more research needs to be done on how to support autistic adults so they can thrive and lead full lives.
That said, there is cause for encouragement: For one, the care your child is receiving now can go a long way toward ensuring he or she grows up to become a capable, if not completely self-reliant, adult. Although it's hard to predict if she or he will grow out of the spectrum completely, early and multi-pronged intervention will greatly help him or her navigate the world. Nevertheless, it pays to plan ahead, whether your child has been diagnosed with severe autism or is considered high functioning.
To read the rest of the story, visit www.autismspeaks.org
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Either the author needs to specify "severe autism " in the title, or he needs to also talk about transitioning into college and the work world, because most autistic people will live independently as adults. I go to a small university where there are fifty autistic people registered with the disability services office, for example. All that paperwork--college, plus living in a dorm or an apartment, registering with disability services if you need it, paying bills, interfacing with professors and working in groups--needs preparation. You can't just say, "Well, s/he's autistic, so that means let's get prepared for a group home", because most autistic people won't need group homes, even if they stay diagnosably autistic as adults (which is probable). More realistic is a transition plan that gets the teenager prepared for living on his own, teaching skills like paying bills and doing laundry and hiring repairmen or dealing with a landlord. Vocational training, community college, certificate programs, or a four-year degree need to be prepared for.
Many autistic young adults don't move out at eighteen; they wait till their mid-twenties. But remember delayed self-help skills are not the same as being unable to develop them. Also remember that even needing occasional help or being unable to work is no reason to arrange for full-time care; those things aren't needed in many cases where they're used. Intermittent care is cheaper, less invasive, and allows for a great deal more freedom. Many autistic adults living in group homes right now could live completely independent lives if they only had a phone help line to call when trouble arose.
A lot of therapy with autistic children tries to extinguish the autism... I believe this is wasted time; therapy should focus on increasing function rather than trying to make the child normal--if he's mild enough to grow out of it, he doesn't need "normalizing", and if he's not, he'll never grow out of it and it's useless. Teach an autistic child the concrete skills that he needs to know to take care of himself and to reach his potential, and you'll end up with an autistic adult who's as independent as possible--in most cases, completely independent. What he is at three is nowhere near where he'll be at thirty.
--an autistic college student
You'll want to start the conversations with your parents now if you have an adult sibling with Autism. There are many decisions to be made and lots of things that will need to be set in place. Giving yourselves as much time as possible will be greatly to your advantage, and for your sister or brother.
Even though your aging parents may resist the conversation at first, to demonstrate that you are interested and want to be an advocate for your sister or brother will take a lot of pressure off your folks. If you need help with how to start the talks, go to http://www.talk-early-talk-often.com/special-needs-adults.html
Special Needs Trusts are a relatively new phenomenon, but all too often the focus is entirely on benefits and not on the real need – providing advocacy for persons with disabilities to prevent abuse and neglect. Choice of attorney that knows the beneficiary’s community and resources are essential. I have focused on SNTs for over 25 years and in my experience choice of trustees. Inexperienced but well meaning financial advisors and attorneys encourage families to administer these trusts but in fact few family members are equipped to provide for the complex needs of a person with a disability.
To learn how to use a SNT as an advocacy tool – go to http://www.achievingindependence.com/Video/SNT_WS_Feb_08/SNT_WS_Feb_08.html . On the left look for the section on the ideal trustee.
To find a knowledgeable attorney in your area go to www.specialneedsalliance.com .
Stephen W. Dale