Thursday, April 16, 2015

1 in 68

1 in 68 is the most recent statistic released by the CDC for the prevalence of autism among kids. This specific number was calculated in 2010 based on kids who were born in 2002. The statistic is even higher among boys although many people suspect that there are many girls who are going undiagnosed because they can fake social interactions and fit in, making it difficult to determine they need evaluations.

When one child in a family is diagnosed with autism the likelihood of his or her siblings also being diagnosed increases. In our family James and Liam have been diagnosed as having autism. Their younger sister is only three months old and it is too early to know whether she will also fall on the spectrum.

April is Autism Awareness Month. Last year our diagnoses were fresh and I was surprised to learn that there is a significant amount of disagreement within the autism community about whether an "Awareness" day or month is helpful. Many people advocate for an "Acceptance" day as an alternative. Many of the bloggers I follow chose to opt out of the conversation this year because it raises so many strong emotions in cyber-space.

While I agree that some of the "awareness" dialogue is harmful because it elicits fear rather than understanding and it can be hurtful to individuals with autism (making them feel de-valued as people, the very LAST thing I want to do), I think we should be careful not to throw the baby out with the bathwater so to speak.

I think that autism awareness is a chance to educate the general public on warning signs so that they can get their own kids evaluated when necessary and more kids will get access to early intervention. James is a much happier kid since we've gotten his diagnosis because I can meet him where he is instead of forcing him to comply with my brute force (as I was doing before we found out that he has autism).

I also think that we need more autism education so that employers will consider hiring individuals with autism to be integral parts of the workforce. Unfortunately 35% of young adults with autism have never had a job or received post-graduate education after graduating college. I think the workforce could truly benefit from having individuals with autism in some key places given their attention to detail. 

In addition to employers being more aware, it would mean so much if more parents and kids knew how to talk about autism. I was recently at my sister's house and our kids were all playing outside together. My 3y/o, Liam, who struggles with communication and play skills pretty significantly, took my 4y/o nephew's matchbox cars to the back yard and was driving them through the mud and dirt. My nephew was a little upset that his cars were getting dirty and my sister handled it with so much understanding and aplomb that I needed to share. She said, "Liam feels more comfortable when he has a car. We don't want him to feel anxious outside, do we? We can always wash the car off later but this just helps him to feel comfortable playing with us." Of course my nephew responded that he didn't want to play with Liam, he was playing with James, but now he has some groundwork for understanding and playing with kids who might be different in the future. Heck, we're pretty much assured of him playing with my kids in the future. My sister's response to him actually helped me put into words why Liam is so attached to cars (he gets a little lost in people games but he knows how to play with a car) but more than that it showed such understanding and acceptance of who Liam is right now. Of course in the future I will try to teach Liam how to ask to play with the cars, how to accept if a friend says, "no," and how to be comfortable playing without cars. But he's just not there yet and that kind of teaching is better set in a therapy session or when we are at home and can handle other environmental factors. But when we are visiting cousins or having a playdate, it means so much to just let Liam be Liam.

No matter if April is Autism Awareness month or Autism Acceptance month, the reality is that autism is an incredibly misunderstood disorder affecting approximately 1% of the population. Which means if your church or school or community has more than 100 people in it there is likely to be an individual with autism present. And the question is, how will you respond when they show up? Will you take the time to learn their strengths or brush them off as weird because they aren't socially adept? I can't wait for James to have his own voice in the world but for now hear the cry of a mother who aches for her children to be accepted as who they are--sweet, joyful, intelligent kids.

Autism for us means James finding the "line of symmetry" on his pizza slice. Hugging people he's just met. Reading early. Distress when people don't follow the rules. Apologizing to the staff at the bowling alley for stepping over the foul line. Floppy arms & messy handwriting. Excited flapping. People commenting, "He seems so normal!"

Autism for us means Liam has a very difficult time with communication. Asking, "I want cookie," at 3yrs 8mos for the first time. Celebrating when he said, "NO! My turn." Confusion, frustration, feelings of inadequacy when I have NO IDEA why he's upset or what he can't communicate to me. Singing "Let it Go." Lining up cars. Sweet smiles. Jumping off the couch. Hiding under the blankets together.

Autism for us means big hugs. Big smiles. Innocence. Pure joy. Trains and cars everywhere. Avoiding large crowds (no big Easter Egg Hunts). Bringing a child's leash because I can't risk them running into the street. Panic. Worry. Tears. Getting kicked out of preschool. Trying new preschools (terrifying). Seeing them thrive in new settings. Bonding with other parents over things no one else would get (melt downs about shopping carts for instance). Celebrating milestones. Chucking parenting advice (especially anything titled, "get your child to (fill in the blank) in 3 days!" hahaha). IEP meetings. Drowning in paperwork that needs to be filed. Endless research and learning.

Autism for us means a different normal. The same intense love for my kids. The same worry about their futures. But set in a different context. My hope is that April's focus on autism will begin to remove the stigmas and misinformation surrounding autism so that my boys and other people with autism will be accepted for who they are with unique talents and abilities.

Liam upset because he wanted to ride his "cycle bike" and he didn't understand that we had to dri ve to the Greenway to ride them.

Our family wearing blue on April 2 for Autism Awareness Day.

James finding his line of symmetry .

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