Let's Remember

I'm guessing that most parents, particularly those with very young children, have at some point or another read something pertaining to autism. Many may have read a plethora of information during pregnancy or shortly there after about what "causes" autism; information that varies from outright false to our best guess to some researched based facts. Many may have been concerned that their child would be autistic.

With statistics now coming in at 1 in 88; 1 in 54 for boys and 1 in 252 for girls, people are starting to panic again, similar to the swine flu "epidemic". I'm in no way saying this isn't a serious concern but more referencing how people will react. We'll be hearing more again from people with their unfounded theories claiming the CDC recommended immunizations must be the cause. There will be those saying it's over diagnosed or not really this high, who are often the same people arguing to reduce funding or not provide the essential early intervention services for these children. Then there will be the people who actually have been trained and/or done research and/or worked with children with actual autism and those who have a child(ren) diagnosed on the spectrum who will fighting to get the truth out there. Fighting to dismantle the barrage of nonsense and misinformation that the telephone game among parents at the playground based on the media's too quick to report without the facts turns into combined with the accounts of famous people like Jenny McCarthy claiming her son was "cured". It really is difficult to know what and who to believe though, and if I wasn't educated on the topic or hadn't worked in this field I would be at a loss for knowing what to believe myself.

I'm someone who likes to go as directly to the source for answers as I can. That's part of why I love facebook. I can be in touch with friends I may not have been otherwise, which provides me with greater resources. I had computer problems last year and an old friend from high school helped out after seeing a status post and then proceeded to fix my laptop for me. I recently emailed an old friend who is a pediatric dentist about taking Rylie to the dentist. I go to a friend who's a doula and other friends who have nursed their kids for an extended period of time for breast feeding questions. Yes, despite nursing both my kids for a year, over a year now with Caleb, I still have questions. No one knows everything and using your resources is the best way to get accurate information in our Google world. In my opinion.

I actually used to get upset with close friends and family who had questions about things pertaining to the mental health field, particularly the facets of the field I have more expertise in, and never bothered to come to me for information. Worse yet is when someone would talk to me about these things like they never knew it was something I dedicated a good portion of my life to. I used to think one, they never heard anything I've talked about in relation to school or work since oh let's say, 1998. Or two, they must think that during all my years of education and work in the field I didn't learn anything worthy of obtaining my advice thus, I don't know what I'm talking about. Both would tick me off. Now, I'm trying to accept that not everyone, for whatever reason, uses their resources like I do, but in this case... I'm going to share anyway. You don't have to believe me and I'm sure people will find others, even other professionals in the field, who disprove what I know but that's really the case with everything, isn't it? That doesn't make me wrong.

Here's my take. All children have their quirks, all children tantrum (well, all children I've ever met), all children are different. The autism spectrum is so far reaching that the "infinite spectrum" would be more accurate. The diagnosis of PDD (pervasive developmental disorder), NOS (not otherwise specified) is one of the most common diagnosis we see nowadays. When I started in the field, ADHD was often the norm. In layman's terms, PDD, NOS basically says, something isn't quite right but we can't say exactly what that is; there's some autistic characteristics but not enough for for an autism diagnosis. To be honest, it takes a lot to see an actual autism diagnosis. Mainly because autism isn't a cookie cutter, it looks a bit different in every kid, sometimes a lot different. There are often dual or multiple diagnoses that are appropriate which make it difficult to know if it's just autism or a combination of other things that make it look like autism. The intricacies of diagnosing autism are endless and once diagnosed, that's a label that child has forever, so you don't want to rush to give that label.

I'm not saying don't diagnose! We are forced to in order to provide these kids with the services they need. Though, like those debating these high prevalence rates, this could be one of the many things contributing to these higher rates. Kids need services and the only way to get them is to put PDD, NOS in their file. It's not inaccurate, but could they be successful without it given the right early intervention? Sometimes, yes.

Once a child is labeled with any diagnosis they are automatically looked at as their diagnosis. People can't help it. This is the case with anyone and any label. This often leads to self fulfilling prophecies. For example. You hear a child has ADHD, you see that child taking something from another child, you automatically assume they are the child in the wrong. In the case of two kids, neither known for poor behavior, one would most likely ask what's going on before rushing to judgement, right? It is what it is, that label makes a difference. People, including teachers and other school personnel, will judge and have preconceived notions of who a child is based on a label. Proper education is often not provided in schools and even when it is, people still have their own ideas of what autism looks like. Parents with a child on the spectrum are fighting an uphill battle from the start, with their daycare, school districts, insurance companies, service providers... they don't need our judgments too.


So, there are new stats out and a new rush of debates over what autism is, how it's diagnosed and what causes it. But, in a few weeks all the hype will die down again. Soon after, those without a child on the spectrum will be looking at a mom, and judging her, as her child hums (loudly), thinking, that child is weird, why does she let him make such an annoying and disruptive noise? Or, maybe the child is rocking and you give a glance and wonder what's wrong with him. Maybe he is on the floor banging his head and as the mom tries to stop him the child becomes aggressive towards her and you think, oh. my. God. if my child acted like that towards me I would....

We become quick to judge, quick to think a child is odd, quick to hurry the other way because you don't want others thinking you are a part of the embarrassing scene playing out in the mall, at the grocery store or on the playground. You might even shuttle your kids away from the "strange" child because you aren't sure what they might do. Rylie isn't autistic but sometimes she can act a little "weird". I even think so. I see kids look at her funny, older kids usually. This always reminds me of the wonderful kids I used to work with and how their parents must have felt in similar situations. I get annoyed with these kids who look at my child funny, but more I think, what are their parents teaching them (or not teaching them) to make them treat others this way?

I think we as parents tend to stray away from difficult conversations. To me, seeing a child who is a bit "different" is a perfect opportunity to teach our children to embrace everyone's uniqueness. I had an opportunity to do this at the eye doctor about a year ago. I knew the child was autistic and he was struggling with the long wait. When he took the initiative to play, I helped Rylie with the same things I would help her with when interacting with any other child, sharing, working on introducing herself, praising her for appropriately interacting. I did this despite his frequent tantrums and aggression towards his mom. We didn't move to the other side of the room, I told his mom it wasn't a problem, tried not to make her feel any more embarrassed over her son's difficult behavior that other's were looking at. Sure, it was a little uncomfortable but teaching our children the right thing isn't always comfortable. I am certainly not looking forward to the oh so comfortable sex talks but we'll have them anyway, well, I hope parents have them anyway.

Bottom line, in a few weeks when the hype and debates from this new round of statistics fade and the autism awareness month campaigns are over, we'll once again be quick to forget. Forget that maybe the child we are looking strangely at, and judging his parent for how they are managing (or ignoring) his behaviors, is autistic. Or more accurately, on the infinite spectrum of autism.We'll be quick to forget that they aren't weird but simply unique, different, often quite intelligent, with a lot to offer the world, just like my child and just like yours. Let's try to remember. I too need to remember. These kids deserve better than our surly looks and their parents deserve more than our judgments. That's what I would want if it were me.