Saturday, February 5, 2011

Why I dont hate Autism

I am over at Hopeful Parents writing about the importance of not hating autism

If you have a few minutes do join me there

If you hate clicking links, here is the post

Why I dont 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 another very important reason to not hate Autism

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

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 be ashamed of it ( see post by Xander's mom in "Wait what")

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

27 comments:

Apples and Autobots said...

This is so true. I think that wishing my kids didn't have autism would be like wishing for different kids--and that feels like a betrayal to me. I try to see it as a challenge that we have to parent through, rather than something to cure. To be fair though, both of my kids are able to communicate. I might feel very differently if I couldn't know them at all.

Big Daddy Autism said...

Well said. My son is not autistic - He is Griffin. Although, I do hate some aspects of the disorder, how can I hate something that is an integral part of my child?

Dana Meijler said...

This is so true. As much as I wish I could take away my daughter's challenges that she will face I often think she would be a different person without autism and maybe even not so joyful, so beautifully into the details and so just her.

I am new to your blog and just spent the better part of two hours reading it! Thank you!

Queenbuv3 said...

I totally agree with you. We have never said we hate Autism when our son is having a moment or a bad week because if we say we hate Autism than it is the same as saying we hate our son. Every child has challenging behavior/issues. But they also have moments that make you chuckle, fill you with pride/awe, feel blessed/thankful etc. Those are the things we try to remember and cherish when times get tough. Our children are the way they are for a reason. None of us deserve to be seen as a sum of all our flaws.

bbsmum said...

Hating takes up energy which could be better directed at finding ways to help our kids. Hating takes time and effort and doesn't solve anything. We have better, more productive, things to do.

KWombles said...

Lovely.

astridvanwoerkom said...

I am an adult with autism, and I'm oten seen as a neurodiversity activist because I don't want a cure for my autism. However, your point about looking to the specifics rather than the generalities, makes sense. There are certain symptoms of autism that I truly want to live without (meltdowns, sensory overload, and anxiety, for example), and I've been successful with that to some extent with meds and the right support.

Regarding the energy spent on hating, I can tell you that it is better spent on helping ourselves or our children to be the best people they can be.

P.S. - I tried to comment over at the Hopeful Parents site, but they have an inaccssible CAPTCHA that can't get through. Can anyone inform them that this is making their site inaccessible to a lot of disabled people (who might as well be parents).

Mr. Daddy said...

Another great post K, and so much of what you state here can be used for describing life in general as well as for ones with different and unique challenges.

It is always a blessing to visit your blog and read your thoughts.

Anonymous said...

This is fantastic. Because if you hate autism, the next terrible step you can take is hating your child. Hating doesn't help. Only through love can you truly help both your child and your family get through the challenges you face. This applies not only to autism but all disabilities. I know a mother whose child has CP who is always ranting about how much she hates the CP and it frightens me because I see how it distorts her relationship with her daughter. It's not healthy on any level.

Rachel said...

I always love reading your perspective. And applying it to my own life seems so easy when I sit and think about how many assumptions I might make.

Being someone with a disability, I can tell you that it has shaped me - and would be difficult to separate from who I am today.

Thank you - for always trying to look beyond the symptoms (as you said), and appreciate what makes your child... well, HIM. The very loveable him!

Þorgerður said...

It is pretty much like hating an earthquake.. not much point there either. Rebuilding and living is what it is about. As always concentrating on what matters... as you point out .. the child.

Navendu Shekhar said...

Love this post! Can surely use moving from general to specific in my own everyday life. And being upbeat too.

danette said...

Well said, K. I agree with the other parents who feel that autism is just a part of who our kids are that I have no desire to change who they are. You are right to suggest focusing on the specific challenges as that is where our energy (and that of our children) is best spent. I do believe our kids will appreciate this approach as they grow older also (at least I hope so).

Julie said...

this is why I love you.

Happy13 said...

Nice! I love it! Thanks for the compliment, by the way. Right back at you!

~Marianna

Kris said...

Great perspective.

korin said...

I remember those first moments (days, weeks) of hating autism, then I realized I don't hate autism, but i do dislike some of the ravages it places on our family (the meltdowns, the lack of sleep, the communication frustrations) Hating autism would mean hating a huge part of who my child is, and I love every speck of her!

Christy@The a-word said...

I'm new here, and I just wanted to say thanks. This makes a lot of sense. Our little boy is nonverbal so far, which is hard, but he has so many strengths. I'm convinced he has a lot of potential to do wonderful things with his life, even if he takes a slightly different path than most people do to reach that full potential.

Anonymous said...

http://autisminnb.blogspot.com/2011/02/autism-interventions-new-york-times.html

Came across this blog. Get a clue and get real intervention for your son.

Anonymous said...

@fellow anonymous

Research in Autism is still nascent. Our strategy is to try out everything, as long as there is no risk, and see for ourselves.

It is more important continue with therapy that we can see is helping our child than to simply pursue one because it has some sort of 'validation'

K- floortime lite mama said...

@everyone
thanks so much for the kind words @Anonymous
We actually use a mix of methods that help our child ( including ABA )
I think really the most important word in a home therapy program is "custom". There is actually plenty of evidence that supports Floortime - including what we see in our home
I think a lot depends on your child - what he needs and what your parenting style is
We use ABA+ST+OT+PT and Floortime philosophy guides our parenting style
If ABA works for you that is wonderful
And I think ABA is great - I just dont think that its the only way
to help our kids
But Barry Prizant says it better
http://autismtomorrows.blogspot.com/2010/04/barry-prizant-debunks-the-great-aba-lie.html

Lisa said...

Beautiful words K.

blackknightsbrood said...

We tell all of our kids that "hate" is a strong word and ask that they examine closely what they are referring to before they throw it out there. I think your perspective on parenting a child with special needs is right on. The history of your writing and the stories it tells shows how much your focus is always on R, and not on autism. We are the same here, for certain. Autism certainly affects our girl, and our lives, but it's never been the focus. Maybe that's why I can't say I've ever felt 'hate' for it. Certainly it can bring unwanted challenges and make life more difficult for our daughter. I'd relieve her of those in a heartbeat if I could. But accepting it as a part of life and focusing on equipping her to live with it instead of hating the fact that it's here seems healthier. Never would want her to have to search for a line between herself and autism wondering how we felt about her if she saw that we HATED autism.

Gypsi said...

So beautifully said. Rejoice in who the child is! How wonderfully put!

alienhippy said...

I totally enjoyed reading this post. I am an adult Aspie with dyslexia, Both of my children are on the spectrum. So are my brother and sister and their children. My Dad is diagnosed with autism also.
We didn't realise any of this until 6 years ago. My blog is a journey of discovery and a place where I can be me. I find this all quite exciting I love reading blogs about ASD kids because it jogs my memory and helps me to see what is Aspie and what is not. I really didn't know that my kids were any different because in my family we are all Autistic and this is our way.
I am glad I found your blog.
Love and hugs.
Lisa. xx :)

Dr. Uffda said...

I just got chills reading this post, specifically the last three lines. Thank you for your honestly, and for giving dignity to individuals, whether or not Autism is in the picture. Your thoughts inspire me.

Rachel Cohen-Rottenberg said...

Sorry I'm so late to the party, K. As always, this post is just beautiful.

Floortime Lite Mama

On my life as the mother of an adorable 5 year old with Autism and Apraxia