Friday, July 5, 2013

Stop right now!

For this month's post I was going to write about my son's first plane journey in over ten years. I was going to tell you how successful our adventure was. I wanted to wax lyrical over the fact that my autistic son coped so well with the many changes and variations that he encountered over the four day period. In fact, I also wanted to tell you about how I just went with the flow and provided him with the love, support and guidance that he required during our adventure. I wanted to share how I felt when we went to board the plane for our flight home.... how my precious boy became stressed and powered his way up the stairs, pushing his way past the other passengers to escape being surrounded by people. I wished to describe the emotions that I felt when each one of those passengers and the flight attendants were so kind and understanding to me and my boy.

However, as I settled my son into his plane seat and then plonked myself next to him, my thoughts flashed to the various comments and blog posts that I have been reading in the social media. The words that are being used day in, day out..... by the many adults in the autism community (and yes, some of those adults are autistic). They tell me that I must accept and embrace my son's autism. They yell that I shouldn't be looking for a cure. They proclaim their disgust at parents who want to try everything possible in order for their kids to live a better life. They cry that they would never want to take away their child's autism.

Well, I say to you.... Stop right now! 

Don't stand in judgement of my choices. Don't tell me that I am a bad mother because I am intervening with my son's autism. You do not speak for my son. You do not speak for me. My boy finds it impossible to communicate. He has had years of therapy and he still can't construct a sentence on any AAC device. He is unable to go to a public toilet unattended. He can't go to a restaurant and independently choose his food and pay for it. Life is difficult for him at the best of times. 

Do you even know how heart-sore I feel because my child is totally dependent on me and will remain so for the rest of his life? Do you realise that I adore my child with all of my being and that I would go to the end of the earth for him? Do you think about the possibility that his autism is not the autism that you know? Do you even have an answer for what is going to happen to him when I die? Do you understand that I accept my son for who he is, however, I also want him to have an easier life without restrictions? Yet, you still judge!

Therefore, I also say this.... 

I will listen to you and take what information is helpful for us... BUT, you do not speak for my son or for me.

So, stop right now!

Stop judging parents who are finding autism to be hard. Stop judging parents for choosing A, B or C. The road that we are on is a very long journey and we all reach our own brand of acceptance in our own time. Have respect for us. Be open minded and understand that we all need support regardless of what you think is right or wrong. Stop telling us what we should be or shouldn't be doing. 

Stop right now ~ it is not YOUR journey!

I remain hopeful that one day we will come together as a community regardless of our beliefs.

- - - - - - - - - - - - - - -

Di has been an autism parent for over 14 years. She doesn't generally open her mouth and speak her mind (on a public forum!!), however, the closer she gets to 50, the less she cares!! ;)
Di blogs over at Bright Side of Life, where she is a lot less opinionated!


  1. Di, this is a wonderful post, and I totally agree with you! Autism is a condition our kids have, NOT a personality trait that makes they who they are. I love my son unconditionally and completely accept him for who he is, but I don't accept the obstacles autism has placed in his path and will continue to fight to make him the best that he can be. Aside from the autistic adults who criticize, I'm also tired of the criticism from parents of small children with autism who tout how wonderful it is. Autism only gets more difficult as the child gets older, bigger, stronger, and more obviously different from peers. Until someone walks in our shoes, that person has no right to judge how we feel. Thank you for being so candid and for expressing what so many parents feel.
    Take care,
    Pam, mom to Alex, age 21
    blogger at One Autism Mom's Notes

  2. I wrote this( in response to one of the 'autism self advocates', responding on a special needs forum. As I just reread that post again I was mad all over again. I'm right there with you. Just. So. Tired. of this divisive crap.

    1. Thanks for your comment, Melissa. I will take a look at your blog post.

  3. Well, all I can say is good for you! Well said. I think there are so many debates as far as Autism is concerned that no-one should judge anyone for the choices they make. And you are right, it would be great if everyone came together as a community. I fear There will always be differences of opinions though.

    xx Jazzy

  4. Wait, so you guys are describing others in quotation marks, belittling the experiences of others that are different from your own, denying that there is any kinship between you, then complaining that things are too divisive and there are too many debates?

    Ridiculous. How in God's name is any of this "hopeful"? "Spiteful" seems a better term.

    1. Paul. Thank you for taking the time to comment. In all honesty there was no spite intended. What I was trying to convey with my post is that autism in our house is not easy. Those who know me are aware that I adore my son and am extremely positive about the life we live. However, autism in our house is very different from those who are saying "hooray for autism". My son is 14 years old. He is severely autistic with very little language. He also still needs me to wipe his butt! Autism makes life difficult for him and that breaks my heart... I don't see the "hooray" in this.

    2. Well, I live on both sides of the fence. I don't take as much offense to what you said as what other commenters were saying. I think some parents (and perhaps not you guys!) feel that their children are broken, and pass that feeling onto their children. I'm not saying it's easy to hold my nearly 4 year old son when he wants to do something (right now, I'm charging his brand new GPS tracker he'll (hopefully!) be wearing every day, as the radio tracker we've been using is awesome but only works for 150 feet and I want a second layer of protection) and I know I will get even more bloody lips as he gets older trying to keep him from running out into a crowded parking lot when he doesn't want me to hold his hand.

      But conversely, I feel a bit sorry for my dad for when he had to deal with me having a meltdown at the hospital over a routine blood test at age 12 that required 8 nurses to strap me to a gurney to get the sample. Yeah, I have a family now, and by sheer luck and timing a wonderful engineering job that tolerates my oddities, strange manners of communicating, and sensory sensitivities, but only because having a person obsessed with telecommunications and with an eidetic memory is incredibly valuable to them. I couldn't even work as a cashier in a grocery store. My parents probably thought I was going to bag groceries for the rest of my life.

      I guess what I'm trying to say is that what advocates are saying (as if I could speak for them, any more than they can speak specifically for your child) is that I'd happily take anything that would let me turn off the constant onslaught of sound, light, and textures. I wish I didn't have to hear the fan in this room right now. But the way our minds are wired to think is really, really exceptional. I wish your son could communicate it to you. I hope someday he will be able to. Mine has difficulty too, and I'd give anything to help him with that (and have spent a fortune so far).

      It's also that the wiring is different. It's like trying to use a radio designed for power in the united states and plugging it in in australia and being upset that the radio didn't work. By the time you swap out enough of the radio guts to work in australia, it's not the same radio anymore. It doesn't mean you shouldn't buy a power adapter to make it fit the outlet, or the transformer to let it work on 220v/50hz power instead of the 120v/60hz it's designed for. But the radio isn't completely broken (it may have some comorbid conditions that need adjustment, mind you) it's just not designed for the intended use.

      My boss says I suck at metaphors, so I hope that made sense at all. :)

    3. Paul, thank you for sharing your thoughts with me. I really appreciate it... and it all made sense. Best wishes to you and your boy. x

  5. I have had to stop reading some blogs about autism that I used to like because they just make me feel like a substandard parent now that they promote embracing autism, but without mentioning the crappy stuff, or if they do, that parents should just accept it, because it's autism, therefore it must be okay. This whole attitude is just adding to my stress and I'm very glad to read here that it's not just me.

    I too would like the whole autism community to come together so that we can support each other without judgement, and look at every child with autism as an INDIVIDUAL with individual needs, and recognise that some do need help to improve their lives and the lives of those who care for them.

    And that not every parent knows instinctively how to help a child with autism - some of us need and will take advice wherever we can find it.

    Perhaps I should've written a blog post about this too :)

    1. @Looking for Blue Sky ~ I think we all have enough going on in our lives without adding more stress, so if a few blogs have to fall by the wayside, then so be it!

      Wouldn't that be great to have the support of everyone regardless of belief?! I also agree with you in that not every parent knows instinctively how to help their child ~ and in fact, I am one of those parents. Thank you for your comment. xx

  6. Through observing my own journey, I found I went through different phases in their journey with autism. I've been through a fix it phase, this is really hard phase, accommodating phase, a gift phase, an acceptance phase and now I seem to be in some sort of hybrid where I'm trying to balance acceptance, accommodations of environment, nurturing different gifts AND helping my son develop (and I'm only 3 years in LOL!). I wonder if the blogs that a parent reads and that resonate vs. offend are different for people depending on where they are at in their journey...and I imagine its not linear for most of us! I also imagine that many of us blog from the perspective we currently have, which may read as strongly oriented one way without knowing the history of a blogger (or their future!).
    Who knows where I'll be next year in my perspectives on parenting and autism...but I'm grateful that there are people like you willing to share your story and perspectives for others to consider. Thank you!

  7. @zisforzen ~ you have covered a lot of ground in only three years! I take my hat off you because I have been through everything that you have but it has taken me ten years!! :-)
    You are absolutely right of course... I know that I blog from the perspective that I currently have and where I am at in my journey. Thank you for your thoughtful and kind comment. x

  8. "Stop judging parents who are finding autism to be hard. Stop judging parents for choosing A, B or C. The road that we are on is a very long journey and we all reach our own brand of acceptance in our own time. Have respect for us. Be open minded and understand that we all need support regardless of what you think is right or wrong. Stop telling us what we should be or shouldn't be doing.

    Stop right now ~ it is not YOUR journey!"

    --This, yes. Learning to let people walk their own paths in their own way is a hard lesson, but it's vitally important in learning to truly respect others. There are many paths and no one right way.

  9. @K Wombles ~ exactly! Thanks for your comment. :)