Monday, August 29, 2011

Autism and Marriage

When Alanna was diagnosed with autism we had many people concerned about Alanna, but also many people concerned about us.  I am happy they were, and they have good reason to be concerned.  Divorce in couples with autistic children is higher than the general population.  An interesting finding is that while most couples experience a rapid decrease in risk after their children reach about eight years old, the risk for parents of children with autism does not decline and remains at the same levels as parents with young children.

It is not difficult to see why this is the case.  Autism, by definition, involves serious developmental delays (hence the term "pervasive") across all developmental domains.  At eight years of age, a child with autism may only be functioning at a three year old level or less.  Most parents are freed of the daily grind of caring for a child of eight - most children can cloth and feed themselves, use the toilet, shower and keep themselves basically clean with some reminders.  They will have friends and can entertain themselves for short periods of time.  Cognitively, they are capable of playing games adults find more interesting and can usually enjoy many adult activities, or learn with their parents by taking up a hobby or shared interest in sports.

It is one thing to have to change a child's diaper for 2.5 years.  It is quite another doing it for 21 years, or longer.  Many parents see early childhood as a challenge that will pass, but for some parents, it will not.  It will only end when they can arrange long-term care and not feel guilty doing so.

Or, here is another example with which I am quite familiar.  It is one thing to be up with your newborn for five to six months each night.  It is quite another to be up with your child for five or six years, or longer without the benefit of daytime napping.  If you are a parent, do you recall how irritable you were with your spouse?  Now, try doing that for six years and it is not hard to see why the risk of divorce is higher.

Add to this the social isolation from friends and family and the economic hardship of having someone at home to care for the child (or working extra hours to provide therapies and interventions), and you have a recipe for disaster.

I pray often for my marriage with my own beautiful wife.  I pray God builds it up, strong and able to withstand everything.  I couldn't imagine raising two children myself, let alone with a child who has autism.  More than once, we have rescued each other from completely losing it.

Wondering how to help a couple who has a child with autism, or other disability?  Help them maintain a strong marriage.  They will need your help and they will be grateful for it.

Tuesday, August 16, 2011

Autism Risk in Siblings

A new study in the journal of Pediatrics has reported a much higher risk factor for siblings of kids with autism.  According to the study, children with at least one autistic sibling have a 19% (26% for male children) chance of developing autism themselves, and this risk increases to 32% if there are multiple children affected.

This means my son, who is developing typically has (according to this study) a 26% chance of developing an Autism Spectrum Disorder.  That's a scary number.

There are many families I have seen where a first-born child with autism precipitates an end to more pregnancies.  This news will make that trend even greater.  Alanna was diagnosed after my wife was pregnant with Tyler, but if she were diagnosed beforehand, we would have thought long and hard about getting pregnant again.  With the risks as high as this study mentions, we would have probably thought the risk was not worth it.


Monday, August 8, 2011

A Kind of Acceptance

When Alanna was younger, I used to buy her a lot of toys.  I still buy too many toys for the kids.  My wife will tell you it's my weakness.  Toys "R" Us is a bad store for daddy.

Alanna was never interested in playing with toys "properly" when she was younger.  She would play with parts of the toys, or lick them, smell them, stare at them, or do any number of "weird" things with them.  This perplexed me a great deal, especially before her diagnosis.  I tried to show her how to play with them properly and figured if I buy the "right" toy, she would like it and play with it a lot.

Fast forward to the present day...

We have taught Alanna how to use a number of toys as they were "designed".  We have taught her how to play with pretend toys, and how to even pretend how to use things for functions for which they were not intended (e.g., feeding a baby with a block!)  We are presenting trying to teach her to play with a variety of toys if they are laid out for her to play with, and we're trying to do this without a visual schedule because this is unnatural and we only want to do that if it is absolutely necessary.

Alanna will play with toys, but usually not for very long without prompting.  She loses focus and goes on to the next thing.  This is usually tied to sensory regulation.  If she is regulated and isn't engaging in activities to stimulate her senses, she plays better.  If she needs deep pressure, bouncing, running, etc. to stimulate her senses, the playing will not last long unless it is prompted.

It occurred to me the other day the purpose of play really is supposed to be fun.  So buying her more toys with the hope she will find out fun means I have to obtain toys she finds fun.  Most toys she finds "fun" are sensory toys.  She will also play games with me, but on her own terms.

I used to think Alanna needed every waking minute to be "redirected" to ensure she was learning from her environment.  Not only with that attitude completely burn you out as a parent, it is also unfair to your kids.  Here's the reality - for Alanna, bouncing on the trampoline and bouncing on her bed is fun.  Pulling out facial tissue and rubbing it all over your body is fun.  Licking stickers and sticking them all over the place is fun.  Emptying your closets and throwing your clothes on your bed is fun.

Maybe playing the way I want her to play is work.  Maybe she does it sometimes because she is interested but mostly because I want her to do it.  Kind of like when your dad tries to show you fishing is fun, but it's not.

Lest you think I've converted to neurodiversity with this post, I haven't.  Play skills are still needed for school, to interact with others and to learn other skills.  But it's still work.  I can hope she will eventually find it fun.  I can try to make it fun, but if I'm really giving her time to relax, shouldn't I let her do what she wants to do to relax (within the limits of safety and sanitation?)

Maybe the next time she is rubbing something all over her face, I'll just join her.  It's work for me, but maybe that is the price of entering her world.