Wednesday, February 29, 2012

Why "My Kid Isn't Like You(rs)!" Isn't The Point

Melody Latimer

There are re-occurring themes among the Autism/Autistic online worlds. The most current, though it comes and goes, is when parents of Autistic kids insult Autism because of their child’s difficulties, summed up by “You can’t understand because you’re high-functioning/have Asperger’s.”

I’ve wanted to rebut this several times (and often do when getting into a comment exchange on other blogs):
  1. No. I am not like your kid. Because I’m an adult.
  2. No, I am not where I’m at because my parents helped me. I didn’t receive any Special Education or 504s or anything.
    1. Actually, when I went to college, this is where I found that I couldn’t even stand on my own two feet.
    2. I have had to have several years of therapy and medication, much thanks to my husband, to overcome my previous years.
    3. For years, I couldn’t even do household chores because of the resulting, built-up anxiety and stress.
  3. Yes, I do know what it’s like to have a child who doesn’t speak.
    1. Daniel didn’t speak until 4.5 yrs.
    2. Daniel’s speech is sometimes even now unintelligible by me, and most of the time by those who do not interact with him on a daily basis.
    3. It can take Daniel up to two minutes to form a six-word sentence. This is greatly decreased in the past year since getting his iPad.
  4. Yes, I know what it’s like to have a child who still has to wear a pull-up.
    1. Despite being a 2E child, Stephen is not fully potty trained.
    2. I’m not sure he even feels it.
    3. He will be seven in just over a month.
  5. Yes, I know what it’s like to have a child who elopes.
    1. The first week after we moved back to Texas, Daniel escaped from the house and walked to the grocery store around the corner.
    2. Daniel will run away from you and every other adult without paying attention to what’s in front of him.
    3. He has nearly been hit by a car several times.
    4. We now take precautions.
  6. No, just because I believe in Autism Acceptance doesn’t mean I refuse to get help for my kids.
    1. Both boys have IEPs.
    2. Both boys had early intervention.
    3. Both boys continued with OT, ST, and Daniel PT after aging out of EI.
    4. Daniel has had ABA to deal with dangerous behaviors.
    5. Stephen has had DIR/floortime to help with his imaginative play skills.
    6. No, we no longer do therapies outside the school directed by a professional. (I decided at some point, kids need to be kids, no matter their disability.)
    7. Yes, both of my children are on medications. One for ADHD, the other for sleep and calming issues.
  7. Yes, I do know what it’s like to not sleep at night because my child is awake all night.
  8. Yes, I know what it’s like to be afraid of my child because he’s become that violent.
  9. Yes, I know that all we want is what’s best for our kids.
    1. That does not mean I will chelate them.
    2. …cure them.
    3. …destroy their sense of self by removing all traces of Autism.
    4. …destroy their self-esteem by saying their reactions to things are wrong.
    5. …drug them to control their behaviors.
  10. Yes, I know what it feels like to watch my child bang his head so hard that he could cause permanent damage.
Here’s what I don’t know ... I don’t know why this would make me hate Autism. I was so thankful to know what it was. What was causing my children not to speak. What was causing them distress and unrest. I was happy to know there was something I could do. That’s what the Autism label is to me. An answer to “what’s going on.”

What I do know is that there is no amount of hate of Autism that will make your child better. There is no amount of vitriol put into treating your child that will not radiate to your child. There is nothing you can say that I have not been through myself, with one of my children, or have seen one of my friends go through.

What you’re going through may have different manifestations. What you’re dealing with at this second may have so much stress attached to it that it seems like there’s no end in sight. But you can get through it. You can accept your child from where they’re at. And once you do that, you can truly start to help your child because you’re not going to be forcing a round hole through a square peg.


Melody's post was previously published at