Autism Parenting Magazine Disappoints

A fellow Autistic blogger, M Kelter, alerted me last week that he is no longer contributing to Autism Parenting Magazine because this month's issue includes coverage on a "curebie" doctor. You need a subscription to see the full issue, but you can see the list of contents on their site.

(If you know me by now, you know I don't provide a voice or links to things I don't agree with, so you'll have to do your own research - besides, I think that is better than just listening to my opinion! So while I will tell my story, I will not name names. I don't believe in giving these people a forum or space on my blog.)

So this particular doctor is a doctor of engineering, but since his daughter was diagnosed as autistic, he suddenly became some sort of biological expert. He no longer gets her vaccinated (he believes vaccines caused her autism) and he believes some sort of mixture of vitamins/supplements will "cure" her.

So after M Kelter informed me of his decision to cut ties with the magazine, I tweeted them to ask why they were including an anti-vaxxer in their magazine. To my great disappointment, they never replied to me. They did speak to him and said it was a matter of a difference of opinion. I'm sorry (actually, I'm not) this particular difference of opinion not only hurts Autistics, but it hurts all of society.

I don't believe you can seriously say you are working in the best interests of autistic people while simultaneously advocating for their "cure."

Also, when "treatments" become a matter of opinion and not based on actual reputable and real scientific facts, you have a great possibility for harm. I mean, I could say I believe eating worms is more effective than brushing my teeth, but that doesn't suddenly make it right, no matter how educated I am.

Why is it ok to experiment on Autistic people? I'm pretty sure most of us these kids didn't sign up to be test subjects. Meanwhile "doctors" and parents think it's totally cool to inject their Autistic kid with B12 in their ass in the middle of the night because CURE.

Not cool, Doc, not cool. Stick to building roads or bridges or whatever kind of engineering you were actually trained for. Shame on Autism Parenting Mag for giving a voice to a quack.

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you.