Saturday, February 5, 2011

Why I don't hate Autism and neither should you ?

In the early days of Autism it seems rather important to decide what we think of Autism

Which camp we belong to

Are we a neurodiversity believer ( ie Autism is simply a difference,  unique way of being )

Or are we a curebie? ( Autism is a disorder, must be cured )

The camp we fall in depends on many things-

Perhaps it depends most, on the particular kind of autism our child has

I had come to believe that as long as we keep giving our child what they  need to bloom – it really does not matter which side we are on ( for of course the most important side to sidle upto is that of our child )

But of late I have come to think that its really important  to not hate Autism

And the reasons are very simple

I think by taking a stand of hating Autism, we make it into a big insurmountable generality  

For instance, our child has a meltdown in a restaurant

We are embarrassed and say – “OMG – I hate hate hate Autism

Or our child has anxiety about going to school or with us being on a business trip and away from home

And we say to other mums and dads of Auties “ I wish Autism would give me one day off

And we sympathize with one another ( for all of us have had those things happen to us ) and we all agree that we hate Autism

But generalities are dangerous

For the implicit assumption is that since Autism is incurable – so are all the aspects of it

Instead I find it incredibly empowering to be specific

So I  ask myself the question

How do I address anxiety ?

By moving from the general to the specific – we  put ourselves,  in the situation of actually being able to do something about it

Another reason occurs to me - as R doing a number tutorial on a computer next to me ,pulls me closer for a kiss

Hating Autism stops you from seeing your child.

It can blind yourself to the magic and wonder of your unique child and make you simply see symptoms

There is yet another very important reason to not hate Autism

Many Adult auties, believe that Autism is a very important part of their identity s

Being a minority myself , I can certainly attest to the fact that when there is  difference – its much better to take pride in  the difference , than to be ashamed of it

So, now if someone asks me what I think of Autism

I answer that I don’t

I think simply of my child

And how to be a good mother to him

But I don’t waste any time hating Autism

K blogs about her life and her charming 6 yr old son at Floortime lite mama


  1. I love this. And couldn't agree more. Thank you for sharing...

  2. Love this. I think that is what got me through the dark days of diagnosis...just focusing on her and what she needed from me. She didn't need fear.

  3. Here here.
    I hated autism for a while. And when I was done hating and had run out of energy from all that emotion I picked myself up and thought, so now what? What am I going do to help my kids? They are awesome, nothing in these boys to hate. They have some really hard obstacles to deal with in their lives and hate is not going to help them with any of it.

  4. Love my child. Hate autism. It sucks. Nothing good about autism whatsoever. Sorry.

  5. I'm in the "love my child, hate autism" camp, too. I also love you, K, and wish I could be as upbeat. However, my child's brand of autism sucks ... self-injurious behaviors, aggression towards others, severe speech apraxia, severe fine motor delays, a gazillion allergies and inability to go anywhere new without major anxiety and meltdowns ... yeah, the whole shebang. I hate it all.

  6. Don't tell me I shouldn't hate autism. Have you seen severe autism? Severe self injury? Children who are subjected to residential facilities away from their homes and families due to the fact their issues are so extreme. There's nothing to love about that. ND parents truly need to get a clue. You call yourself Floortime Lite Mama which suggests that you believe in some play/ Greenspan therapy. Clearly your child is not too involved. Please don't preach to others who do have very severe children.

  7. Actually I am not an ND ( neurodiversity ) mama
    I am not saying autism is a good thing at all
    or that you should love autism
    My point is simply that the clubbing all the problematic behaviors - under the umbrella of autism - makes the problem big and insurmountable.
    While being specific with problems- like agression, anxiety etc may actually lead to solution or atleast lessened severity of the problems
    plus energy spend hating autism is much better spend elsewhere - helping our children/family/ourselves
    And I have not only seen but dealt with severe autism

  8. So are you saying that parents who don't love autism fail to "club out" these behaviors? Just because a parent may hate autism does not mean they aren't working their asses off every day with all of their energy addressing these issues you mention. Again, I may hate autism but I am working very hard with great therapists on all the things you mention. Sorry but your message here is bewildering and insulting.

  9. Your post was beautiful - I am thankful for your positive outlook towards your son (he is very blessed to have a mom like you), and your willingness to share this with others. My husband and son have a much easier time, than I, seeing my daughter (with autism) for who she is - our beloved daughter/sister, without trying to imagine what she would be like without autism. I have been spending the last year, moving away from her label, and how much I hate autism, and instead focusing on how I can best help her and just loving her - quirks, behavior issues, and all. Anyways, I am glad that you shared your views today.

  10. You are right, there is nothing to love about autism and hating it is a waste of time and energy.

  11. I wish Lee knew you as well as I do, K. She would then know that you are not trying to be insulting. You are someone I think about in my dark moments on this path, when I hate autism. Live with love, work through difficulties with compassion. Love you!

  12. Autism overwhelmed me when my daughter was first diagnosed. After a couple a months I realized Autism was taking energy that my daughter needed. I switched my focus back to her needs and it has worked much better for us.

  13. Like I did when I was a child, I'm avoiding camp. Too cliquey, too mysterious in its subtest.
    I appreciate the heads up to focus on my kid, my life, my family... and not the words (that have such a diversity of meaning anyway) that drive us and the 'real' world further away from each other.
    You are brave and smart and I love hearing what you have to say.

  14. Beautifully written. We all love our children, but the challenges suck, no question about it. Some of us are lucky to have kids where we can say this. But I know there are a lot of parents struggling from the tremendous burden they endure to support their child with autism, both emotionally and economically. If your marriage is at risk, if your other kids are suffering because one child needs you more, if your family budget is strained and you can't afford to pay for the services your school district won't offer, autism just adds to the increasing weight for everything else. If I was one of these families, I'd be writing the same words as Lee.

  15. I think See Levy says it best. Most families that I encounter face all of these obstacles. Autism can ruin families, marriages, finances and family life in general. There is nothing to love about that.

  16. Lee, I think you misunderstood. She didn't mean "clubbing" as in physically clubbing out or addressing the behaviors, she meant clubbing as in combining them together.
    Autism is abstract and means a lot of different things. I've also seen people blame everything but the kitchen sink getting clogged on ~*autism*~, this sort of nebulous and strange otherworldly being that has consumed their child. What K is saying, if I understand correctly, is that it makes no sense to hate an abstraction rather than focus cool-headedly on the specifics that have caused the diagnosis to apply to a particular child.

  17. Some of the comments seem to suggest that those of us who have stopped hating autism, as it was not helping us, are advocating that we should love it. If you read the post and comments carefully you will notice that no one has advocated loving autism. To infer someone's stand wrongly and then castigate them for it is neither correct nor fair.
    We are all 'victims' of autism and deal it with differently. If hating autism helps you in dealing with it then great - more power to you !! Just don't insult us by saying that we have not faced/or are not facing tremendous hardships simply because we stopped hating it.
    This site is called 'hopeful parents' - perhaps you should go elsewhere for doom and gloom.

  18. @AT-Some parents may have a different perspective than you and K . It is ignorant to classify people who live in reality of autism as "doom and gloom" and to tell them to go elsewhere. Grow up.

  19. @Helena, again please read entire post/comments before commenting - they are not long. I have clearly stated "If hating autism helps you in dealing with it then great - more power to you".
    In sharp contrast to my acceptance of your views (see quote above in case you missed it) you seem to have the audacity to insinuate that given our views we don't live in the "reality of autism" - wonder who actually needs to grow up!!!
    And yes let me reiterate, you have every right to wallow in misery if you want to but given that this site is called " Hopeful Parents " you are probably in the wrong forum. Most of us come here for hope not further anguish.

  20. @AT-more like "Parents In Denial" in relation to this post.

  21. i have to like this i hated autism at the start when my son was diagnosed but now he is my son who i love very much and autism is part of him so if i hate that i hate him if people understand what i am trying to say i new to this and i find every day hard but every day i get that hug that smile and makes it all worth while to any parents out there who have autistic children its hard but keep up the good work well thats my opinion tought i share