I'm a parent of an autistic adult. My son, Nathaniel, was diagnosed around 3 years of age (he's now in his 30's), but as I look over some family movies (see March 30, 2011 post) I can see that he displayed many of the 10 signs of autism well before then.

His mother and I had only one thing in mind. What do we do?? In the early 80's there was little we could find about autism (no internet - what a lifesaver now!). We had his immediate needs to worry about. Was there a cure? Did he require medication? Childhood education had not yet come to mind. But with time, we needed to find out what resources were available around us.

Planning usually comes late for parents with autistic kids. We (well his mother and I) worried about his immediate needs and not the future. When Nathaniel reached 18, life as an adult posed many questions.

I hope that this can be a place where parents with autistic adults and children can communicate with those of us who have dealt with autistic adults. Yes, there are books and magazine articles about what to expect, and legal advice, but I have yet to find a place where experienced parents can share these experiences, give advice, and help parents of young children cope with the future of their child.

Nov 2, 2011

Special Needs Trust

The article here is a good start for parents trying to plan a future for your autistic child. I couldn't stress more the comments on the need for a "Special Needs Trust." Use you knowledge wisely.


Jenny Conley said...

I have an autistic son who just turned 18. I feel like I've dropped the ball. I try to understand him and what quality of life is happiness for him...all I can think of are things that would make me happy...him having a career, a family, friends...etc. I'm starting to realize, his idea of happiness and security is entirely different than mine. I'm really struggling with where to go or how to plan his future. I need help and any experience shared would be greatly appreciated. thanks.

Dave said...

I think that all parents of adult autistic kids from before 2000 feel like they dropped the ball. We know so much more about how to educate our special needs kids. My son, now 35, will never have a career or a family. He has really one one friend (I don't think that he quite understands the meaning or friendship, only familiarity.)Happiness for my son is a stress free life so anything you can do to accomplish that will be helpful.

I have posted previously what I have done for my son. We were lucky in many ways. If he can not take care of himself and needs pretty much 24 hour attention, as my son does, you had best look into group homes (NOT institutions!)administered by the state (by the way, where are you from). My wife and I of course hated this change for him, but you have to consider what he will do after you are gone (thus the discretionary trust). This is particularly important if there are no siblings, but even if there are, you can't really burden them with 24 hour care of their brother.

I would be glad to answer any questions you might have. I've been there.

Anonymous said...

We are from Canada and our Autistic granddaughter now has a job (she is 21) for three days a week from 10-2, It seens to satisfy her. I would like to know what the difference is between a special needs trust and a discretionary trust also a Registered Disability Davings Plan (which we have in Canada). gfaw32@persona.ca

Post a Comment