I read a blog today that seemed to hit how I feel at times, yet some missed the mark a bit for me. (You can read it here) Now, I understand that when people try to "relate" to what we're experiencing with Piper most of the time it's what I call "comfort talk" where they are trying to show their support for us. Other times, I find myself getting overly frustrated when people without raising a child with ASD try to give me or my husband advice by what they saw on TV or how they know someone, who knows someone with an ASD child and begins to tell me what we "should be doing" or "trying to do." I'm not blind to the fact that people around us want to help us or think they're helping us by pushing other people's story as a fact or how they know someone who was like Piper and now they're 5 and all this time it was a "misdiagnosis" of autism. These stories do not give me hope, it makes me think 1) You're being ignorant 2) You're in denial and basically telling me I'm stupid, a liar, or that I don't know my own daughter. Autism sits on a broad spectrum and finding 2 children identically the same isn't as easy as you may think. Sure, they all posses similar characteristics, but what works with one may not work with another. I've heard different reactions to Piper's diagnosis many say "Piper is too cute to be Autistic" and "She's so happy that's not Autistic" or "Lots of children have tantrums, that's normal for her age" These remarks are the exact reason so many children go undiagnosed in this world. Perhaps the line between Autism and a non ASD child is so blurred due to how society/media deem Autism to look, now there's confusion. Autism is not black & white and I do believe that with proper parenting, education, and nutrients, a child on the spectrum can lead an absolutely normal life. To be honest, I probably would have been one of those parent's that wouldn't have known Piper was on the spectrum if it wasn't for the fact she was unable to talk like other children her age. I could have come up with many excuses for her toe walking, her fascination of objects, music, noise, textures, tantrums, anxiety in new places, her comfort in playing and being alone, and the countless other characteristics I noticed at her young age - other than Autism. However, I think that as a mother we have this instinct when something isn't right. So, if you do question your child may be on the spectrum there is no harm in taking them to your pediatrician or specialist to find out for sure. I promise you may worry about the stigma of having that term with your child, but, without it they cannot get the proper help they need and you won't be getting the proper education to care for them. Parenting a child with ASD is unlike that of parenting a "non Autistic" child. I can get in to how its different, but if you really want to know you can message me or google it. (lol)
So, I ask that if you don't have direct experience other than TV and people stories please don't feed us any of those. Now, I should probably clarify what I mean in a less 'general' sense than above. If you know someone who has experienced things like us, has a child with Autism, you're related to someone with Autism, or you're just wanting to share with us that you understand what we're going through - that isn't what I'm talking about. I love hearing about other families like us or people letting us know they're thinking about us. What I'm talking about is telling us we're doing things wrong by suggesting we should do things a different way - or trying to tell us we need to parent Piper like you parent your children because in your opinion, Autism isn't really that different. I'm specifically speaking about trying to tell us how to parent our child or telling us Piper isn't autistic because of whatever experience you've heard or seen from someone else. It's not comfort stories we need, because we're not sad about her diagnosis. I know there are some who would rather conform to society's definition of "normal" but, we aren't. We've discovered the vast majority of people know nothing about autism or realize that children and adults on the spectrum can be HAPPY the way the are and that is a real shame. As a society we need to appreciate autistic people for who they are, not who you wish they were. Einstein was probably autistic as well as many other people throughout history (Steve Jobs, Bill Gates, Beethoven etc), so instead of saying sorry perhaps one day you'll say 'Thank you'.
I think we're one of the lucky ones, we see life in a totally different way than before, we have strengths we never knew we had, and as parents Dan and I have found that we make an amazing team in figuring out the best way to care for our daughter. In addition, I'm very happy that we started this process of diagnosis at such an early age giving Piper a head start in learning the skills other children pick up naturally from observation. Things children normally pick up on, we need to teach Piper. For us, the most difficult is teaching her how to communicate & our desire to help her learn to do that through speaking instead of actions. I feel like if we can master this, it will make the other aspects of her Autism clearer for us to help her because she can tell us what is making her uncomfortable, irritated, or upset. If you want to talk to Dan and I about Piper - we'd love to talk about her. If you want to show us support, treat us like you would anyone else. :)
Erika & Dan Harvey
A blog about our journey through the spectrum with our daughter Piper. Enjoy and feel free to share with others.