Saturday, July 18, 2009

No Cure.

There is no cure for Autism. I often hear parents describe their child as "cured" or "recovered" from Autism, and I think to myself "I pray that will be me one day, that I will be able to say Max is cured or fully recovered". But truly, there is no cure, there are only best outcomes. Do I think Max will be a best outcome case? Absolutely. I am only now starting to accept that he will never be cured.
What does this mean? It means that I am coming to terms with what Autism is, what it means to Max and our family. It means that I am reassessing all of the relationships in my life, observing other people's relationships, and trying to determine what a normal relationships is.  I'm asking myself questions like "are normal relationships the be all and end all?" and having internal debates about the assumptions I make about what I deem necessary to live a happy, fulfilled life.  Just because I think one needs X, Y, and Z to be happy doesn't make it so.  I only think that because it is all I know.  Who am I to judge what makes a good relationship?  Maybe it is okay to have a relationship 100% based on mutual love of a certain topic, or relationships where one person has the understanding that the other is not able to have a fully functioning emotional connection with them, and accepts it for what it is and for what that person is able to give.  All along I have been thinking that Max needs to be able to experience life based on my "ideal scenario".  It probably isn't going to happen, and that is my problem, not his.  
I really have no idea what the future holds.  I certainly have high hopes, and I dream of Max being happy and fulfilled  (whatever that looks like).  I don't look at video of Autistic adults on youtube as an indicator of where we are going, because I don't think they are an accurate prediction of what Max will be like as an adult. The therapy Max is receiving is ground breaking, and he has received early intervention.  I know that the progress will continue in tiny incremental steps, and I need to be patient.  There is no magic cure, only hard work and a tonne of perseverance.  All that to get to a best outcome.

3 comments:

  1. I agree. If you want any proof of this, talk to parents of Autistic kids who are now 13, 17 and even 21 years of age. I have met several and although we do "biomedical" I never think of it as a cure, or a way to make Khaled "normal" so he can go to regular school etc. I do it because I knwo through tests that he has some issues that need fixing. However when it comes to our relationship with him, his unique personality, his Autism, it is not going anywhere.

    I have seen videos of "recovered" children and for ever video I have watched I know there is a silent majority of thousands who did what parents in those videos did and are not seeing those "wow" results.

    I constantly redefine Autism. I think one day we will have several names for this broad diagnosis. It is the epidemic of individuality.

    ReplyDelete
  2. Anonymous10:52 PM

    I agree as well. Great post. I totally get that feeling of hoping for and wanting that "optimal outcome" and "recovery" for my son. Since we're still in the early days post dx, I am clinging on to these "recovery" stories like a lifeline. Without hope, it's too hard to go on with mundane routines of daily life and the challenges faced by my son. Like the previous poster said, it isn't about making him "normal", but rather helping him acquire the skills and tools he needs to be as productive and independent as he can be and to help him so that he can form true and meaningful relationships with other people. I don't really want to change him - I just don't want to see him face challenges and suffer.

    Sometimes I think it isn't the autism that's so devastating, but rather the lack of supports/accommodations in our society, and the ignorance and general intolerance for people that are different that make my son's autism so hard to cope with.

    I just look at how far my son has come since we started his therapy and I know that he is capable of so much. Cure or no cure, I am hopeful for his future.

    ReplyDelete
  3. Anonymous2:51 PM

    Well put Kat. Alex & I finally reached that point in thought a few months ago. It's a hard road, lonely most times but we hang on on to "hope". Max looks wonderfully happy-- remember a picture is worth 1000 words and these speak volumes. A happy, healthy life with some independence is what we are striving for for our young man...all the while celebrating all victories big and small along the way.
    xTag
    P.S Congrats on your new & ideal job. All the best.

    ReplyDelete