The Numbers: What do they mean?

We love numbers. We're a society of statistics. We use statistics for a variety of reasons. The autism community is no different. We love statistics, too. Many of us can recite some of the numbers about autism off the top of our heads. For example, autism will affect:

1 in 150 children
1 in 94 boys

What some might not know is that according to a study by Cambridge University released last month, those ratios in Britain are:

1 in 60 children
1 in 38 boys

Without debating the specifics of the numbers, what these mean to me is that there is a very good chance everybody knows at least one family dealing with autism -- even if they don't realize it. That's why I like the idea of "Autism Understanding" month.

One figure that seems to get a lot of attention in the autism community (and the special needs community in general) is the divorce rate. According to Autism Speaks, the divorce rate is around 80% for parents of autistic children. I've heard 75%. I've heard 85%. Whatever the number, it appears to be high.

According to a study released by the Easter Seals in December 2008, however, the rate of divorce for parents of autistic children is actually less than the rate for parents without special needs children (30% vs. 39%). Ignoring the fact that our only interface with Easter Seals nearly led Joy to violence, their study is about as convincing as the Autism Speaks number.

Whether it's 30% or 80%, frankly, I'm starting to find the number to be meaningless because underlying the discussion of divorce is the level of stress autism puts on a marriage. While many of us like to put a happy face on our situation, what goes on behind the curtain is often harder than we lead on.

That same study released by the Easter Seals revealed many statistics about parents of autism that some of us dealing with it deemed as obvious at best or useless at worst. I know I laughed when I first read it but when I looked at the study through the prism of someone who doesn't know much about autism (which is what we're asking of them during "Autism Understanding" month -- see things through our prism), I realize some of this information might not be all that obvious.

Here are a few of the statistics from the Easter Seals study I found interesting (my concerns are in bold):

The percentage of parents of children living with autism who feel their children will be able to:

• Make his or her own life decisions (14% compared to 65% of parents with typically developing children)
• Have friends in the community (17% compared to 57% of typical parents)
• Have a spouse or life partner (9% compared to 51% of typical parents)
• Be valued by their community (18% compared to 50% of typical parents)
• Participate in recreational activities (20% compared to 50% of typical parents)

In addition:

• Seventy-four percent of parents of children with autism fear their children will not have enough financial support after they (the parents) die, while only 18% of typical parents share this fear.
  
  They also express extreme financial strains and costs associated with caring for a child with autism, with more than half stating that the cost of caring for my child:
  
• Drains my family’s current financial resources (52% compared to 13% of typical parents)
• Will drain my family’s future finances (50% compared to 10% of typical parents)
• Will cause me to fall short of cash during retirement (54% compared to 13% of typical parents)

• 76% of parents of children with autism are concerned about their child’s future employment, when only 35% of typical parents share this fear.

What the study doesn't mention is the intensity of these fears. All parents worry about their children's future. For me, however, these concerns are more like full blown panic attacks. They keep me awake at night. The concern I have about future employment isn't about what type of job Robbie will get but whether he can hold one down at all. That panic has subsided over the past few years but it still remains strong. Some parents are so worried about their children's financial future, they simply state "I can never die" and, to a degree, mean it.

Some will interpret this discussion as whining or a search for self pity. The very first time I mentioned something like this, I was met with both of those reactions. Others will want me to hurry up and get to the happy part of the story. I can only point to the discussion and say, "that's the way it is". All marriages are hard. Marriages with children are harder. Autism (and special needs in general) adds several other layers of stress to a marriage. This is going on whether or not the divorce rate is 80% among us or 30%.

Is that whining? I don't know. I'll let you be the judge. I can tell you that many parents of autistic children want you to know about it but few want to say it out loud. To my knowledge, I've never shared this type of information in a conversation. It's much easier to do in a blog, an email or even a book. Discussing it live does sound whiny.

I recall the advice of former Notre Dame Football Head Coach, Lou Holtz: "Don't tell your problems to people: eighty percent don't care; and the other 20% are glad you have them." There's probably an element of truth to that. If you've read this far, you're probably a parent of 1 of the 150 children diagnosed with autism and you have the same problems. If you're not, you must be a pretty special person -- someone we say "gets it". But that's a discussion for another day.