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.

Apr 3, 2011

Parade Magazine for April 3

For us parents with autistic adults, isn't this what we fear the most (Parade Magazine, April 3). In one small way, Nathaniel was lucky. The cost to the state of MD was lower since there was more money to go to autistic kids back in the mid "90s when he entered the program. On the other hand, the facility in Austin, as mentioned in the article, and other facilities around the country didn't exist. Although Dana in many ways is like Nathaniel (no speech or communication, eye contact, full time care, cute as a button)he never has tried to communicate complex thoughts by other means like typing or pointing to pictures to convey needs.I will say again that planning has to start much more early that when your child reaches 18 or 21. Things that you don't even think about like estate planning (discretionary trusts) need to be talked through with family and, as you see, lawyers. Sad but true.


That Man Who Lives in Diane's House said...

Reading Dana's story, I find it both heartwarming that she has done so well and come so far. And of course, contrasting it with Nathaniel's story, it's heartbreaking. As you noted, the changes in legally obligated, as well as advances in the understanding, treatment, and recognition of both limitations and skills has come a long way. The ten years between Dana's birth and Nathaniel's may have been the period of the greatest progress in this area and obviously she has been able to make great progress with the help she's received.

At the same time, we still don't know the causes, or why the impact is "X" on some children and "Y" on others. A better understanding of those factors may and will hopefully go a long way towards giving these unique individuals a better shot as living what we tend to call a "normal" life. And in that respect, Nathaniel's life, and that of other autistic children of his generation and those that have followed, helps to provide that hope and optimism.

You have long expressed concern about Nathaniel's long term future and I hope that stories such as Dana's and others will help society see what these children and adults are all about, as well as society's need to help actively prepare for the long term support of these unique individuals for their lifetimes.

I don't mean to bring the political differences and financial difficulties the USA is currently trying to deal with into this, but if someone can explain to me why we seem to be focusing our humanitarian responsibilities on foreign soil before fulfilling those same responsibilities to our own citizens, I would appreciate that.

Yes, it is only by accident of birth that those who need humanitarian aid are American's versus any other place of birth, and yes we are fortunate enough to provide vast sums of money and resources to supporting humanitarian needs around the world, but we do need to place the needs of OUR family at least slightly ahead of those of other families in need.

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