Some advice for “autism parents”

I came across this awhile back, intending to respond to it. I thought it might be kind of perfect for this blog. The following is a quotation from an “autism mom” re this article.

“My deleted comment on HUFFPO ~ regarding an article a mom wrote about autism. You can read it here: FYI, this is meant to be advice to parents of the newly diagnosed. Terrifying.
AUTISM = DIVORCE / POVERTY / MEDICATED MAMA

The following was not posted.

How about you add, “ignore numbers 1-10”.  This list is bananas.  As a mother of a child with autism, I find calling him “autistic” akin to calling a child who has mental retardation, “retarded”. It just bothers me. He is NOT the diagnosis.  A child with cancer isn’t “My cancer kid”. Enough already. SO, yeah, there is that.  Number one is medicate yourself? Are you serious? Who thought that this was a good idea? What planet are you from? #1 should read, “Stop feeling sorry for yourself, you will have time to mourn later, because Mama? You have some stuff to do… “.  Do some research, evaluate how “healthy” your child is, and move forward.  Can your child speak? No? How about you try some sign language, create yourself a beginners PECS system with some basic images and a three ring binder and some Velcro.  Valium? Sure, why not add your future substance abuse issues to your already mounting pile of problems.  Not to mention..can you imagine the level of destruction your child could cause your home or to themselves while you are half baked on your couch?  AWESOME.    Sure, spend lots of time with your other kids. . .but be realistic about this.  It is important that your other children have undivided attention, this isn’t a novel idea. This is being a mother.  Your other children have a sibling with big time needs.  They need to deal with that.  They don’t have to take it on, as their own.  They don’t have to be forced to be in embarrassing situations all the time… but this is their sibling. All of our children are loved by their parents in their own way.  They will be fine. Keep your lines of communication open, and be real with them. Good. God.  How about we put, “see a naturopath”. Get an alternative perspective, someone who is not trained by big pharma, sent on trips by big pharma… Listen to what they have to hear, have an open mind, and then make an educated / informed decision about your plan of action.  Seriously, when was the last time you saw a pediatrician write a note on a “almond milk” pad, with their “no more red dyes” ball point pen?  Seriously…this list is pathetic.  I would spend more time typing, but have to shave my legs. I look like a wilder-beast. You know…because I don’y have time to do this every day. Just like every other mom who is spending quality time with their kids.  You have a child with Autism. So does a parent of 1 out of every 88 kids.    Get active ~ find out WHY this is happening.  Clean up your life. Only have people in it who are positive.  No bottom feeders, no  needing grown ups…  set firm boundaries with people, and most importantly? Breathe.  Remember to frigging breathe.”

Yes, the article is crap. Guess what? So is this “advice”.

“Autistic” isn’t the r word, and the sooner you admit that the reason you are hesitant to use it is because you cannot accept that your child’s brain is different and that is okay, the better.  Admit that you have a hard time equating the child you are raising to “those autistic people” and move past it.  Because the way you treat autism? It’s important. Your child will be the one to listen to how you feel about autism. If you proceed with treating it as something to be cured, you are telling them that something they cannot change about themselves is bad, wrong, evil and that you would love them more if they were “normal”.

As for whether regular doctors are trained in naturopathy, well, no, they aren’t. They aren’t trained in unproven, often dangerous techniques labeled as “treatment” or “therapy”, like chelation, bleach enemas, and using hyperbolic oxygen treatment when it’s not needed. This doesn’t mean they are completely ignorant of alternative diets, such as Feingold and gfcf. My daughter’s pediatrician tested her for allergies and she does have a wheat sensitivity (no surprise with my celiac diagnosis) so we avoid that (and several other allergens). I wouldn’t necessarily subject a child with no sensitivity to a diet that is difficult to work around and expensive, especially kids who already have texture sensitivities.

As far as who you allow into your life, may I suggest that you allow more than just those who are positive? Because if you have an autistic child, having an autistic teen or adult’s perspective is something you need. Even I, as an autistic adult, need the perspective of other autistic adults and teens. You, as a parent, need to realize that professionals, teachers, and other parents aren’t your greatest resource. Autistic adults willing to educate are invaluable and might be just what you need for a reality check. Because let’s be frank – your fellow non-autistic parents don’t know what it feels like to be autistic.

Parenting is hard, regardless of disability. Accept your child for who they are so they can accept themselves. Treat adult autistics how you want your children to be treated one day. Realize that ability to type does not equal “high functioning”, nor does it even mean we are verbal.

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4 thoughts on “Some advice for “autism parents”

    1. Not all of it is bad but like it frames autism parents as having so much of a harder life than any other group of parents and that’s so not correct in any way.

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  1. I just found your blog and want to read every single post. I can’t stop. I could cry for the relief of your kind, encouraging and authentic voice that I have needed to hear. Thank you dear one. Thank you for bringing your love and voice to the world.

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    1. Oh gosh, this is such an amazing comment. I wanted to use the word “nice” but it’s more than that. It’s affirming and so much something I needed to hear. Thank you for reading!

      Liked by 1 person

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