A Future With Autism

There’s a video out on the web now called Autism Yesterday, echoing the title of another video that appeared in 2006, Autism Every Day. The latter video by director Lauren Thierry strove to present “what it’s like” for families to live with a child for autism. The other video, “Autism Yesterday,” presents the message that “autism is reversible” via biomedical interventions; autism could become a thing of yesterday if families chose to use such treatments (many of which we have used for my son, when he was younger).

I’ve never been one for taking a lot of videos of my son. I suppose you could say, I’m too busy watching and being with him to be inclined to run and get the camera. It is certainly “life with an autistic son” every day in our household (including yesterday, today, and tomorrow), but it’s also “life with an ADHD dad” and “life with an occasionally frantic working mother” (who, on contemplating her fall schedule of 3 classes, 2 tutorials, and advising students in two different capacities this morning, put her head on the table in mock-fatigue: Mock because I got right up and started to ask my students about Virgil’s Aeneid and its connection to the history of Rome).

I’m not sure if Charlie will ever read the Aeneid (I’m not sure, also, if my students had done their reading for this morning’s class). I am a bit more sure that Charlie will need support from Jim and me throughout his life, as 54-year-old Susan Dungey of Stevenage (UK) notes about her 34-year-old son, Peter, who has Asperger’s Syndrome. Peter, who works as a technology consultant, was only diagnosed a year ago. Referring to the I Exist campaign of the National Autistic Society (NAS), The Comet quotes his mother:

“As the parent of an adult with autism, I am very worried about what will happen to them as we grow older.

“Autism is a lifelong condition yet, as I Exist has found, many adults with the disability struggle to get the help they so desperately need.

“Many feel isolated and ignored and are entirely dependent on their families for support. I want to see the right services and support in place so people with autism in Stevenage can reach their true potential because the right help at the right time can have a profound effect.

“And now I’m urging people in Stevenage to help put pressure on local and national government to do more to transform the lives of adults with autism.

“It’s frustrating dealing with a child knowing there’s something different but not having anywhere to go for help. So I would like to see a centre set up in the area for people of all ages with autism because something like this would have made a great difference to us.

“Peter has managed to get through his life and deal with things in his own way. But when his father died he didn’t know how to deal with it.

“From the social angle it has been difficult for me because my younger son, who is now 33, was socially minded and Peter found socialising very difficult and I couldn’t understand that.”

I Exist hopes to transform the lives of autistic adults in the UK by providing for better supports and services. According to the NAS’s report on adults with autism, 63% do not receive enough support to meet their needs; 15% are in full time employment. The need for housing with trained staff is profound, as are the needs for employment (and Charlie will probably need too work with the assistance of a job coach). And then there are the life changes—like the death of a parent—that Susan Dungey notes as having an especially large effect on her son Peter.

I’ve certainly no overarching solutions for these issues which can easily overwhelm, and drive one into panicked worry. I’m a day by day kind of person—while we’ve been thinking ahead about a Special Needs Trust for Charlie and about where we might live (maybe in California, as my extended family is there)—I focus most of all on making sure our days with Charlie are good, are full of teaching him the things he’ll need to know to take care of himself for the rest of his life. I do think it’s time now to start talking about the needs of autistic adults: Autism is lifelong. Many autistic children can make tremendous gains through education and therapy as my son has. Many will still need supports and services as an adult.

There’s a famous passage in Book 2 of Virgil’s Aeneid (which I did discuss a bit with my students this morning after showing them this image and here’s another) in which the Trojan prince Aeneas flees from the burning city of Troy with his father Anchises on his back, his wife Creusa following, and his son Ascanius holding his hand. That’s how I see our life with Charlie over the years, with him beside us, hand in hand, moving ahead into the future.

A future with autism, and with Charlie. It’s one blockbuster that I don’t think I’ll want to miss.