"Autism Parent"

In the last 6+ months since Elias's diagnosis, I have been feverishly reading / watching lots and lots of media about autism (could you tell?). Some of the things that I read are from other parents of autistic children, as well as autistic adults. I've also read scholarly articles, am reading Neurotribes (for which I do not currently have the words, but suffice it to say, it's wonderful), and Facebook posts from many different pages that I have "liked." As much of this consumed material is via the Internet, some of it has been great, some of it has been okay, and some cringe-worthy. But I am seeing all facets of parenting a autistic child, just as there is a diversity of all parents. The stakes seem to be higher with an autistic child because of the lengths to which some parents are willing to go to "cure" their child.

Here are a few archetypes that I have observed:

The My-Child-Must-Be-"Normal" Parent
This parent cannot accept their child's diagnosis. In fact, this parent may have been in complete denial that there is anything different about their child and may have gotten them diagnosed much later than necessary. They scour the internet for "cures for autism." They are big on causation and are ardent supporters of Autism Speaks. They put them through many many hours of ABA therapy in the attempt to extinguish any autistic behaviors and to help them "pass", that is, act like an NT kid. They probably have not told their child about their diagnosis, so this child knows they are different but not why. This parent also tends to whine about how difficult it is to have an autistic child on their various social media accounts and use phrases like "I didn't sign up for this." [newsflash: when you become a parent, you SIGN UP for whatever that child, typical or not, brings to your life] They are also more prone to post content that may be inappropriate or embarrassing to their autistic child (such as potty training or meltdowns) in the name of "Look how hard my life is!"

The Biomedical Parent
The Biomedical Parent is similar to the My-Child-Must-Be-"Normal" parent but more extreme in their application. They have pinned their child's autism on external causes: vaccines, pesticides, environmental toxins, etc. These parents put their children on Gluten-Free / Casein-Free diets (GFCF), place them in hyperbaric chambers, they find a Defeat Autism Now! (DAN!) doctor who will prescribe any number of vitamins, supplements, anti-fungal treatments, and will promote chelation, which is a treatment to detoxify heavy metals from the body. The most fervent adherents may also buy into "miracle" treatments, such as the Miracle Mineral Solution, which is actually a bleach enema to be administered every 2 hours for 72 hours. The latter, in particular, is tantamount to child abuse in my opinion.

The All-In Parent
This parent respects their child's neurology and understands that they are different, yet pursues as many avenues as possible in trying to get their child help to acquire the skills they will need to be functional and as successful as possible in society. They never miss an opportunity to make something a learning experience. Their house looks like a preschool and they are constantly using Pinterest to gather new ideas for sensory play, speech supports, and the like. Their child is in a therapeutic school and may do more therapy after school or on the weekends. They spend thousands of dollars and untold hours on treatment.

The Neurodiversity-Unschooling Parent
This child has parents who completely accept their child's neurology and how that makes them different. They do not do anything that will force them to "pass" or attempt to assimilate them into the greater society, instead insisting that what needs to change is society and not their child. They maybe try placing their child in a school at first, but when it becomes clear that the school is not celebrating their child's neurology as they are, they will pull the child out and "unschool" them. Because of the nature of autism, their schooling may look like an extreme form of Montessori due to a perseverative interest.

At the moment I'm not sure what kind of Autism Parent I am. Certainly these archetypes are simply that: broad and exaggerated representations. I know FOR SURE that we are not the Biomedical Parent. Nutritionally, Elias is just fine. He's a good eater (though picky) and he's growing appropriately. He eats fruits and vegetables: protein is more the struggle for him but he's getting there with the introduction of chicken nuggets. As I don't believe that vaccines cause autism or that autism is a disease, there's no reason for chelation, which is (1) not a proven treatment and (2) I would never subject him to that.

I'm probably most like the All-In Parent, though I believe that my child needs some downtime and while I do search Pinterest for ideas every once in awhile I'm not constantly giving him activities to do, nor do we have additional therapy outside of school at this point. We are considering bumping him up to a full day next semester, which is something that we will discuss with his DT during our conference today. I'm hesitant because this is my last year with him where he won't be in school full time and I enjoy our quiet afternoons where I'm not dealing with the other two. But if his therapist thinks it would be helpful, I'd be willing to let him.

While I agree with the Neurodiversity-Unschooling Parent that societal perceptions of autism need to change, I'm more of a realist. Elias will need to function in the real world and I want to give him the skills that he will need to function in that world. To be fair, the archetype that I present above is not what neurodiversity actually is, as Jess from Diary of a Mom so eloquently puts it in this post. I particularly love this quote:

Acceptance means no longer setting ourselves and our children up for failure by grading their a-typical progress in relation to someone else’s typical development. It means no longer trying to eradicate the thing that is such a huge part of who they are and instead working to make it less disabling [emphasis mine]. That’s the heart of this really – accepting autism as a fundamental part of our kids and then working with them to leverage its gifts and mitigate its challenges.

We 100% are going to pursue the avenues open to us in order to provide Elias with the tools he will need to function in society and to fulfill his God-given potential. That will most likely look different than it does for his siblings and our challenge is to help him find his way, working with his neurology instead of against it.