Sunday, June 01, 2014

Reactions to my son's diagnosis

Three weeks ago, we learned that our son has mild Asperger's, or autism spectrum disorder.  We've been doing a lot of reading, talking to each other, explaining here and there to friends, and planning to meet with some folks at his school (which happens tomorrow).  Most people have found out from Facebook or Twitter and read my blog post about the diagnosis.

But as I've communicated with other friends directly over the past few weeks, it occurred to me that I have had to respond to a particular reaction a few times and it solidified for me what I think and believe about my son and about autism/Asperger's.

These were perfectly well-meaning folks, and their reactions didn't upset me, really, but they did give me pause to think, and I felt I needed to respond immediately with what I believed to be most helpful.

These friends apologized.  They expressed that they were sorry to hear about our son's diagnosis.

I immediately responded that they didn't need to feel sorry.  We are glad to have this information, and also relieved to know what causes our son's difficulties in school and with some other social situations.  Now that we have understanding, we can help him feel and be more successful.

During this same few weeks, I've been reading a lot and I have come to discover that the best known Autism organization, Autism Speaks, is at the center of considerable controversy for a number of reasons I won't go into here.  One area of concern is that the organization seems to consider autism a disease that needs a cure.

My son doesn't have a disease.  He doesn't need a cure.  What needs to be eradicated is the ignorance around autism.  It's a different way the brain is wired in some people, and for a subset of that population, the effects are much more impactful than for others with the condition.

I wouldn't want my son to be changed.  We, as a family, will learn together how navigate the world with autism as a part of it.  People who meet my son, whether they know his diagnosis or not, fall in love with him.  Who would change that?

Writing to my son's teachers about his diagnosis

Five days ago, I wrote to all of the teachers my son has had this year in his first year at a new school.  I also included his counselor, the learning specialist, the division head (like a principal for grades 4 and 5), and the psychologist who performed his evaluation and gave us the diagnosis.  I thought I would share in case any other parent would find it helpful as a model for explaining Asperger's.

Hello everyone,

I am writing to C's teachers from this year because I wanted to share a little bit about what we recently learned about C's learning differences.  Earlier this month, C was diagnosed with mild Asperger's Syndrome.  To be more accurate, since the new DSM-V does not include Asperger's as its own diagnosis, he officially has autism spectrum disorder.  Again, it's very mild, but it is a definite neurological difference, compared to most of his peers, that helps explain so many of the challenges he's faced all his life.

In C's case, we see the Asperger's Syndrome most clearly in the following areas:
- low frustration tolerance (when he becomes overwhelmed, he shuts down -- his brain does; it is not a choice)
- slow processing speed (this is not an indication of intelligence, just processing)
- problems with motor coordination (especially with writing)
- deep interest in certain subjects (tsunamis, ships, World War II)
- being behind his peers in some social interaction skills (this includes not being able to pick up cues that people don't have time or are not interested in hearing about his specialized interests, and also talking like a "little professor" about the things he knows a lot about)
- emotional reactions to unexpected situations (abrupt change in routine, being caught off-guard, not feeling like he has control over choices, being embarrassed by not being able to do the same things the same way his peers do)

Please understand that autism and Asperger's are not caused by parenting mistakes or a child's choices.  It's a different neurological layout of the brain's wiring.

C knows about his diagnosis, but he doesn't fully understand it yet.  We've been working with him to explain when things come up that encourage conversation about his differences and how they are a part of his Asperger's, and not his or anyone else's "fault."  We don't really know yet how he would feel about discussing it with anyone at school.

A friend and fellow educator recently pointed me to a video she had just shared with her sixth grade students to help them understand a classmate who has autism.  I wanted to share it with you, as well as a link to a blog post I wrote the day we learned C's diagnosis.

The video is by a young man who himself has Asperger's/autism:
(He actually has about 175 videos on his YouTube channel, so I've got summer homework.)

And here's my blog post from May 10th, the day we got the results of his evaluation:

Since you've all been an important part of C's life this school year, I wanted to give you some information that, although we got it late in the school year, can help explain some of the things we didn't completely understand earlier.  And you will, no doubt, meet more students like C (though Asperger's and autism present differently from one person to another), so well-informed is well-prepared.

Thank you for all you've done for our son this year.