Dismissing Autism Makes Me Nauseous.


I am a very passionate person, which can be a great strength and flaw, but when it comes to my children, I tend to think it is mostly a gift.  Because I don’t easily take no for an answer, I don’t accept things for what they seem, and I generally don’t let ignorance beget itself.

What is frustrating, though, is that no matter how passionate I might be, there are people who are equally as passionate and… opposite.  And that’s fine– diversity is a good thing– but when it negates the very existence of your child’s issues or, in fact, blames parenting for the challenges faced in your home, it really is bothersome.

For instance, when in the midst of autism awareness month, you find an article like  this nonsense, stating that autism is a false ‘epidemic,’ you get a little nauseous.  I think it is just so easy to write about autism like it is some philosophical or psychological game when your child does not have a diagnosis of it or does not meet the criteria for it.  Families dealing with autism struggle every day, not because the parents aren’t trying, not because the children are bad, not because the child is lazy or antisocial or any other stupid casually used word that sums nothing about that child up at all.

I hate the argument that the label of autism is used lightly, as if people WANT it.  When my son’s issues truly became obvious to me last July, I cried myself to sleep for an entire week straight, not because I had made up his problems to alleviate my responsibility as a parent, but because I had jotted down notes about him and started searching and realized he met the criteria for autistic disorder– a lifelong and extremely challenging disorder.  Believe me, the tears I shed were not out of joy– I wasn’t relieved to realize my son has a permanent set of challenges that will make his every day life difficult.

And that’s another thing.  I love when people assume mild autism is not challenging, as if it just means a kid is awkward.  What seemed like mild autism in our household has made getting dressed, eating, feeding, walking up stairs, going out in public, playtime, bathtime, all facets and aspects of life etc. a great challenge.  As our pediatrician said, “a 2 out of 10 is not a 0.”  Why don’t people understand that?  And why don’t people understand that autism affects children and people differently at different stages of life?  My son seemed mild at one time, and he has made a lot of progress in some ways, but now he seems more severe than before because he is getting older.  I love when people say kids diagnosed with mild autism grow out of it.  On the contrary, he is growing into it. His issues in self injury and not responding to his name are not just a frustrating behavioral issue of selective listening or sensory challenges– they are true safety issues.  Mild autism is a myth, my friends.  If a person is on the spectrum, he or she is on the spectrum.  Autism is real.

I also need to emphasize that I don’t care about hand flapping or spinning or other harmless self stimulation behavior.  We have no plans to target those behaviors in a behavior plan.  We don’t need an explanation for those movements; we don’t need to ban lining up trucks.  But we do need to understand that those movements and repetitive play behaviors are telling of his state and level of comfort, that sometimes they are useful ways of coping with stressful situations or uncomfortable sensory experiences.

But eye poking, self-pinching, self-punching, hitting an infant sister, slugging Mom or biting Dad, meltdowns of epic proportions… these things are not okay.  These are not just behaviors that can help us understand him– they affect health and safety of an entire family and friends and more.  Do these behaviors need a label to be handled?  Not in and of themselves, but when they occur with enough other criteria for diagnosis, you realize that these behaviors and the other social communication challenges in a child with autism do not occur in a vaccuum.  It makes more sense to look at all the challenges together and give it a name than to only analyze one piece of a person.  It makes to figure out what works best for a person with alllllll of these issues.  It’s not narrow-minded or easy to do things with the autism label; it’s smart and comprehensive.

Looking at the whole person is part of why I am glad that the DSM V will include a sensory criteria for diagnosis of autism.  My son has serious sensory issues that are not directly explained by his diagnosis of autism as they are not a current criteria for diagnosis, but many people on the spectrum have at least some sort of sensory issue from hyper to hyposensitivity.  The fact that the sensory issues coincide with these other challenges is significant and worth being part of a ‘label.’

And it cracks me up when people act like labels are just a fad or the easy way into services.  As if labels are fun!  Weeeee, let’s go to the developmental pediatrician today and get scripts for occupational, physical, speech therapies! This is AWESOME!

Um, no.  But the label does open up doors to services… because the kids who are diagnosed with autism need the services.  How does that not make sense to people? A kid needs intervention so much that they are diagnosed with autism or a related pervasive development disorder… and this is bad?   This is bad that children and people of all ages are then being cared for the way they should be?  No, this is good.  And it might be that this ‘epidemic’ is partly explained by providers understanding children and developmental issues better than they used to understand them.  Identification might be better.

But that’s not the end all be all of this ‘epidemic.’  I’m telling you, I grew up in America… I went to public school, and I didn’t see the same issues facing children when I was little.  I have an exceptional memory, but I don’t remember a bunch of boys who could have been labeled with autism who were instead “just trouble makers.”  (And I also contest that the kids of my era who were “so lightly diagnosed with ADD” had serious challenges in school and needed the services they received.  ADD isn’t a myth, either.)  There weren’t a bunch of kids sitting there unable to pull up their pants or answer to their name or walk into the restroom because of the sound level of flushing toilets.

I have seen quite a few children with these issues now without even looking for them.  I find it a little odd that most of the boys I know who are in my child’s age range have some sort of developmental anomaly, whether it be a speech delay, sensory challenges, strange levels of anxiety or something else.  Something seems amiss here.  Sometimes I wonder if the human race is simply changing, maybe something in the environment is changing us, maybe we are adapting to something… I have no idea what, but it is not an over diagnosis thing.  I just don’t believe it, and I am one skeptical lady.

Most importantly, I want to emphasize that I do not write this with anger at autism or my son himself.  I love my son with such passion that I can become quite zealot-like about autism.  I am passionate about my boy and the challenges he faces because to some degree they make him who he is.  And he is beautiful just as he is.  He is wonderful and brilliant and adorable.  He is diagnosed with autism not for the sake of ease or fads or fun.  He is 1 in 54 boys in NJ for a reason.  There’s no joke about it.


About rhapsodyinautism

I'm a Mom of two little ones-- a two-year-old son newly diagnosed with autism spectrum disorder and a baby girl who is too young to make any guesses. I work a little bit from home for an environmental nonprofit, and I am a freelance journalist. I love cooking, singing, and autumn weather. And I'm married to a brilliant, involved Daddy. My son is an auburn-haired smartypants who loves trucks and jazz. He taught himself the alphabet at 20 months. He has a beautiful social smile, but he finds eye contact aversive. He is the reason I am writing this blog... because there is a huge lack in legislation, funding, insurance coverage, and understanding in regards to autism spectrum disorders. This will be my place to advocate, tell the tale of our journey, and hopefully share a few tears and laughs along the way. This is our family life, and we have embraced it.

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