Thursday, September 16, 2010

autism, ethics, and genetic testing.

The interview Scott and I gave to the CBC yesterday about new research findings that have pinpointed a genetic test for Autism has had my mind spinning for the last 24 hours.

What if?

What if Scott and I had undergone genetic testing before we were married to see if we were a good match for reproducing together? If we had been told that a child we created would likely be diagnosed with some form of Autism, would we have gotten married? If we had decided to get married anyway, would we have decided not to have children?

What if I had found out at my 12 week checkup and ultrasound that the fetus I was carrying would be born with Autism? Would I have continued the pregnancy? Would I have even considered having a second child once I knew the risk?

To me, those are all the “what ifs” that are negative, because different decisions we might have made with this information would unravel the life we have now.

But, what if when Max was born he was tested for Autism right away? We would have known what was going on with him. He could have started treatment immediately. We wouldn’t have gone through the agony of searching high and low for an answer as to what was wrong with our son. We wouldn’t have had to beg healthcare professionals to take our concerns seriously. Max would have been better understood. He would never have been locked in a closet by a frustrated daycare teacher. What if.

I am a huge believer in having as much information as possible to make an informed decision. But we are all born perfect in our own right, and we all have “flaws” that make us who we are. While I am no fan of Autism, the idea of not having Max as my son crushes me. The world needs different kinds of thinkers. Individuals with special needs and differences are what teach us humanity, tolerance, and acceptance. There is a beauty in Max that one only understands upon meeting him. His life has value. I’m glad I didn’t know before we had him that there was a chance he would have Autism. But I wish we could have known he had Autism so much earlier, because we could have started helping him sooner.

Genetic testing is a very powerful tool. It needs to be used responsibly.

22 comments:

  1. First and foremost, there is NOTHING wrong with your son. Never has been. I resent that word ever being used in the same sentence with autism. I have Asperger's syndrome, and there is NOTHING wrong with it or with me. I am just different from everyone else, and I thoroughly enjoy it. I have 3 children, 2 of which are on the autistic spectrum. There is nothing wrong with them, they are different just like me. I love them all so very much. So please, watch which words you use when referring to both your own son and autism. Just love him and the experiences you face with him. Yes they are demanding. Yes, they are not all fun. But neither are the experiences with NORMAL kids.

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  2. I have a 2 1/2 year old daughter with autism...I couldn't agree with you more!

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  3. Anonymous11:50 AM

    I agree wholeheartedly with you on everything you said. Genetic testing is a slippery slope. Useful in the right hands, dangerous in the wrong ones.I don't know what we'd do without our Samuel. I see the world with completely different eyes because of him. We wouldn't change his essence for the world. I would rather change the world for him. I do agree that early detection would have been very helpful, ecspecially for his older brother who is on the spectrum too.

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  4. @CIFC I totally appreciate where you are coming from. I write from where I am at currently on this journey with my son Max. Perhaps my feelings on the matter will change at some point, but for now, the feelings I express are authentic and I would do myself a disservice if I were to use different words so I wouldn't offend others.

    @Christine - it's a heck of a journey. We found the twos and threes very challenging with Max. It seems to be evening out a bit now that he is four and we are seeing a tonne of amazing progress!

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  5. @anon - the most stressful time for us was just getting to the diagnosis! This would have been a very different journey if we had been able to start proactively addressing Max's needs early on instead of dragging him all over Southern Ontario from doctor to doctor searching for an answer! I wouldn't change Max, but I do hope to help him develop skills so that he can have a happy life.

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  6. i saw you on the tube last night, and i thought that last night's genetic testing revelation was a loaded one. it forces you to think about how different your life WOULD HAVE BEEN...on one hand, you have been through so, so much with him, and yet, he has made his triumphs. on the other hand, he still has a steep hill to climb, and the climbing never stops.

    both options are heartbreaking...but then look at him. he's such a gorgeous little boy. and look how far he's come! i was watching him during your interview yesterday, and i developed my little crush on him, as i do every time i see his pics.

    genetic testing might have saved you some heartache (or even cause you to make some tough decisions), but look at how far you've come, baby!

    you guys are awesome. great interview.

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  7. Thanks Dalia! Genetic testing is certainly a slippery slope. I definitely put myself out there by acknowledging that knowing Max would have Autism in advance would have forced me to consider options I never would have considered otherwise. Back then I didn't know anything about Autism. I was uneducated on the topic, as many people are, and I likely would have made a decision from a place of fear and thinking I wasn't strong enough to raise a child with special needs. I know now that is not the case, and that Max is my beautiful gift, and I am strong enough for this. But it's only in living it that I know that. The only thing I would change is knowing sooner, once he was born, what was going on with him.

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  8. Anonymous12:33 PM

    Of course there is nothing "wrong" with Max. I appreciate the thoughts expressed regarding the social construction of ability and what we all consider "normal." But let's not get sanctimonious with a parent who has to clean up smeared feces in the middle of then night. I am sure that how one accepts or does not accept their child's autism depends on where that child falls on the spectrum.

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  9. I know some pro-lifers are really just hypocrites when their own teenage kids get pregnant, but I know inside I am a true pro life individual due to my beliefs and aqeedah in Allah and all that.

    Also we are meant to suppress what-if questions because they bring doubts in your mind and benefit no one.

    Having said that, I think its really important to know right away as well...the sooner you know something is up with your kid the sooner you can start making the best of your resources. I respect your point of view.

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  10. Anonymous1:08 PM

    I agree and disagree. I have two children on the spectrum - a 9-year-old boy with autism and a 7-year-old boy with Asperger's. I love each dearly and treasure their uniqueness, but the stress of trying to keep my older child safe has started to change my thinking. No matter how many locks and alarms we use, and attempts we make to child-proof around the house, it seems an impossible task to prevent every possible disaster. He has also escaped twice at school during the last couple of weeks. He is gentle, sweet, intelligent, lovable, and loving, but the anxiety of protecting him is a lot to handle. I do think something is wrong when attentive, educated parents and professionals have a difficult time protecting a child. Not sure we can simply look at that as "simply different from everyone else." That being said, I would be devastated to not have him as my child. I treasure him and feel truly blessed.

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  11. This is the risk of genetic testing. What's even worse is that if the testing is not 100% accurate, children will be killed in utero because they *might* have autism. Unfortunately, there have probably been thousands of children who died before birth because of a Down Syndrome diagnosis, easily detectable before birth.

    I actually once read a blog comment (someone actually posted this) of someone who said that we should help children with autism because the condition cannot be detected before birth. But he said that, if it could be, those pregnancies should be terminated, and if the parent chose to have the child, have no help from the government (not that many of us are anyway but...) I was pretty pissed reading that...

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  12. I love that you wrote this post Katrina. I thought it was an interesting (and abrupt) way for the segment I watched to end. The idea that "knowing" might have changed your actions.

    I have no children yet. I cannot comment on what I will do in the moments of preparing for the birth of children I choose (if possible) to have. And while I can see the point of view of genetic testing as a "slippery slope" it makes me wonder about the implicit bottom of that slope. To me it implies (or sounds like from some of the posts above) that the slope heads towards terminating pregnancies based on testing information. This ides does not bother me.

    What I see is that the impact of genetic testing gets mingled with people's moral foxholes regarding pregnancy termination. I think having the choice to become a parent is the most important choice one can make and that choice includes all the choices along the way to stay pregnant - or not.

    Just intriguing to me that the perecieved "controversy" around genetic testing is not about genetic testing but about ending pregnancies. Because I think you have given a fabulous perspective on how genetic testing can be of a benefit to children, families and individuals in the long run by offering intervention and support early.

    You and Scott continue to amaze me with your passion, strength and commitment. I only hope I have a quarter of what you've got when I'm ready to be a parent myself.

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  13. Write however, and whatever, and use the words YOU want to use, (referring to the first comment).. I know what you meant.. Sometimes I wonder if I would have wanted to do the test for number 2... but really didn't even know about it then, nor knew #1 had Aspergers anyway. I am glad we are where we are, and I personally feel my kids are fabulous.. Would not change them in any way.. ANd yes, days are sometimes so godamn hard, but we have some unique moments that are just so.... surreal, and yet real! These kids are only different in the way they think... and they way they think makes them act out in unusual ways.. having said that, my oldest knows he is different, but we teach him to cherish that, that he is special... why be ordinary when you can be special.. Our challenges can make or break us... I prefer to become a stronger woman because of my life... Great topic!

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  14. @AutisticWisdom - the testing is far from full proof - I think the story was more about the fact that we are getting closer to being able to pinpoint what causes Autism. The things that fall out of that are discussions around "when" these tests should be administered and "what" should be done with the information.

    @Raye - took the words right out of my mouth. Seems like many people are unable to separate the science from their own beliefs. It's just another example of why church and state should never intermingle.

    @SensoryMom - there ARE days that sometimes goddamn hard - but you are right, the unique moments are out of this world. Only a parent of a child with Autism could understand that. :-)

    Such great discussion has been generated by this experience - I am beyond thrilled to part of a community of such thoughtful thinkers!

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  15. Anonymous6:04 PM

    I'm probably going to start a shitstorm here, but here goes.

    I can't help but roll my eyes whenever I hear or read people who spout their own version of that nonsense saying that "we're all perfect in our own way." We all have problems, some of them physical, some of them psychological, some of them personality-based, and so on. I'm more than willing and capable of identifying the many things that are wrong with me.

    I resent that anyone would judge Kat or I for thinking that if we could snap our fingers and make Max's autism go away, we would. If there's nothing wrong with having autism, why is medical science trying to find out the cause of it? Why are there charities devoted to raising awareness of autism and to the dream of eliminating it?

    Just because we wish our son wasn't autistic, that doesn't mean we love him any less. If you're on the Autism spectrum and you wouldn't change a thing about yourself, that's your prerogative. Right now, I don't know for certain if Max is ever going to be able to hold a steady job, have lasting friendships and romantic relationships, and truly be able to socialize with the world around him on a functioning level. If he does get to that point, it will be after we've invested tens of thousands of hours and hundreds of thousands of dollars over his childhood to get him to that point.

    We love Max and Cameron more than anything else in the world, but we'd be doing Max a huge disservice if we pretended there was nothing wrong with him.

    Scott

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  16. Anonymous8:49 PM

    Amen, Scott.

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  17. I'll second that. Amen Scott. If I could cure Alanna I'd do it in a heartbeat.

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  18. This TED video of Temple Grandin says a lot:

    Autism and why the world needs all kinds of minds http://tinyurl.com/262hpqk

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  19. Interesting....this comment disappeared (maybe blogger ate it). I'll repost it - it is from my all time favourite commenter "Anonymous":

    *******************

    I can relate to much of what you write. Any genetic test would be very helpful for the purpose of early intervention.

    I want to add to "corruption's" comments. I tend to believe that words carry a lot of weight and to say something is "wrong" with a child is very powerful. No one is saying that you can't want a better life for you son or that you want his challenges to be less severe. It is clear that you love Max tremendously. I believe that by labelling our kids as having something "wrong" with them we devalue them - not in our eyes by in the eyes of society. It suggests that it's okay for society to view them broken- as less. I'm not saying that this is done intentionally. I think that the first poster was trying to point out that the words we use can sometimes reinforce how society devalues people that do not fit the norm. Also, I would hate for my son to grow up and read that his parents thought there was something "wrong" with him because he has autism. DIfferent for sure but not "wrong". Just food for thought.

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  20. And now to respond to "Anonymous":

    If Max grows up and reads this and is able to understand what I have written and it bothers him, he can start his own blog about how much his Mother irritates him. If that happens, it means I have been successful in helping him develop to a point that he is able to understand feelings and emotions and express his own feelings and emotions. I can live with that.

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  21. Anonymous2:26 PM

    It will also mean there is nothing "wrong" with him. I suppose we can agree to disagree. I'm happy to hear I'm your all time favourite commenter since I only commented on your blog a handful of times.

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  22. >>Also, I would hate for my son to grow up and read that his parents thought there was something "wrong" with him because he has autism<<

    How sad; many people with autism will never read what their parents write or comprehend it. And if their parents didn't see something "wrong" and try to treat it, there would be no hope they would ever read it and comprehend it. I'll take that risk. If my child can read this comment and understand it and is angry at me for labelling her that way, I'll be happy. It means she can read and understand her own emotions.

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