autism · Down syndrome

Why I hope there’s never a genetic test for autism.

 This post has been swirling around my head for years. Right after Casey was diagnosed I went to an autism convention type thing. They brought up the fact that there were new genes being linked to autism all of the time. I got all excited. That would mean I wouldn’t have had to jump through all of those hoops to get him diagnosed! It would be like it is with Down syndrome! I could have just known in advance and been prepared!

Fast forward several years. I have a baby with Down syndrome. A baby I thought everyone would just think was beautiful, wonderful, etc, because that was the bubble I lived in. I thought everyone wanted a baby with Down syndrome. I remember being so jealous of the kids with Down syndrome in Casey’s Early Intervention classes.  I knew somewhere in the back of my mind that *some* people aborted babies because they had Down syndrome, but I thought that was rare.

That bubble burst when I learned that OVER 90% of babies who are prenatally diagnosed with Down syndrome are aborted.  I’ve said that statistic before, but I still just can’t get it through my head that the number is so high.

So it brings me back to the topic of this post. THAT is why I hope there’s never a genetic test for autism. Because, again, in my experience (I am not a spokesperson for Down syndrome or Autism) autism is much, much harder. But the rewards are every bit as great as they are with Down syndrome. Casey is amazing. Every day I get to see little glimpses into what his brain is working on and it is FAR superior to what mine does. We just don’t get it.

A few months ago Abby and I visited Dr. Rosenbaum, a geneticist extraordinaire at Children’s National Hospital in Washington D.C. While taking Abby’s medical background, he asked if there were other family members with genetic conditions. I mentioned Casey, but then said, “but that’s not really genetic.” Whoops. He very quickly corrected me. He said it’s totally genetic.  I sort of breathed a sigh of relief (his autism wasn’t my fault), then at the same time felt the bile rising in my throat.

If it’s purely genetic, it won’t be long until there’s a test. And when there’s a test…what would happen to the next generation of people with autism? People like this:

This is Stephen Wiltshire. CBS took him on a 20 minute helecopter ride over Manhattan. Over the next three days, he drew this amazing picture.

The rest of his story can be found here.

Or how about Derek Paravicini? 60 Minutes has covered his story a couple of times. Here’s an excerpt:

The entire story can be found here: http://www.cbsnews.com/video/watch/?id=6734911n

 Or how about this handsome young guy?

This is my Casey.  You can’t tell by the way he looks that he has autism. You wouldn’t guess it when you saw him cuddling next to me on the couch. You wouldn’t think he had autism when you saw that he was the first person every night to tell me he loves me. He’s fabulous and he’s funny.  He’s amazing to me in every sense of the word, and I truly believe we are only scratching the surface of the magnificence his future will hold.

If (and I believe it’s more of a “when” thing at this point) there’s a genetic test for autism, I’ll tell you what I see happening:

90% of them would be aborted. If not more. I believe that the number of abortions of children with Down syndrome will now increase because of the ease of testing (I wrote all about that here), and I’m sure the numbers would be the same, if not worse, with children with autism.

CRAP like this will happen:

Sue. They SUED! This is not the time or the place for this rant, which I REALLY want to go off on. Holly, over at Not A Perfect Mom’s Blog does a better job putting into words what we are ALL feeling on this one. Read it.

What I’m saying is there would be cases like this. Cases where the parents were the very rare few that are told definitively that their child does not have autism…and then does…and those parents will SUE because this isn’t the child they had wanted.  Where doctors would be forced into offering the testing and the abortions based on their own fear of “wrongful birth” lawsuits. 

It will be like it has been in California since the 1990’s. “They flatly admitted that California’s prenatal testing program’s purpose is to reduce the number of children born with Down syndrome through earlier abortions.” (Leach, source below). And by so doing, have saved the state money in what they term, “preventative care“.  They see these tests as being overwhelmingly cost affective because they prevent the extra cost to society that people with special needs sometimes incur.

Listen, I’m not against prenatal testing. I’ve had the blood tests and/or in-depth ultrasounds looking for Down syndrome and markers for other things with each of my pregnancies.  It’s good to know going in what you are dealing with. Had we known Abby had Down syndrome prior to her birth, we would have elected to have her at a bigger hospital. We would have read the books on the subject before her birth. But let’s be honest. That’s not really what they are used for most of the time. And the statistics show that. 

I would not have signed up to have a child with autism in the beginning. I would have never aborted him or any child with a disability because that goes against what I believe. But, when I mapped out my life when I got married to Lance, autism and Down syndrome were not a part of that picture.

Which makes me glad that I’m not the one responsible for mapping out my life. I’ve learned just to leave it up to my Maker. The One who created these children.  These children, and really all people with special needs, are here to teach us. Here for us to learn how to be a better, more compassionate and patient society. What will happen when we lose that in an attempt to create a race free from those lives that some believe are better thrown away? Who will we be then? I shudder at the thought.


More on the subject:
Eugenics, American Style by Tucker Carlson
Repeating an Atrocity with ‘Preventative Care’ by Mark W. Leach 
Better Genetic Test for Autism?, Science Daily
and my Angry Down Syndrome Awareness Post (the same reasons people choose to abort a child with Down syndrome will definitely carry over to children with Autism)

27 thoughts on “Why I hope there’s never a genetic test for autism.

  1. Hey… did you see the news story about the autism specialists in France who have found a link between lyme disease and autism? They're calling it lyme-induced autism. They think that a large portion of children labeled autistic may be suffering from lyme disease instead. I'm going to speak to Deacon's Dev. Ped about it on Friday. BTW… the links between autism and specific genes haven't been proven. It's all still speculation. I know that some scientist claim that they "know" that autism is genetic, but not one of them has been able to offer proof.But back to the point of the blog… yeah. It's scary and wrong. I hope they never do identify a genetic cause because it will just be another reason for mothers to kill their babies. It happens too often already. I'll never understand the "I would rather abort because I wouldn't be able to give the baby up" mentality. I mean… you're saying it's emotionally easier to KILL your baby than to place it in a loving home… REALLY?

  2. I have heard of the link. There hasn't been any big studies on it yet, so I'm not sure what to think of it. There's something new that comes out every couple of years as being the cause to at least PART of autism cases. I believe in the future they will find subgroups of autism. Some caused by genetics, some by having a body that cannot process toxins or foods, etc. You're right, they haven't found one specific gene that affects all people with autism. But with autism symptoms varying as widely as they do, I doubt they ever will. And maybe there's hope in that. Maybe because they won't be able to isloate just one gene, maybe then they won't be able to test for it. But with as far as science is coming, I wouldn't be surprised if they one day had a test that could detect multiple genetics "flaws" that would determine whether or not a child would be born with ASD.

  3. Lexi, rest assured that there won't be a reliable genetic test for autism. The best they'll ever get is some increased risk of having autism based on genetics and the reliability of that will be so poor that you might as well throw the test away. Down Syndrome is easy–you can find the extra chromosome. There are a number of disorders that are simple genetics and can be diagnosed with certainty with a simple genetic test, but autism isn't one of them. If a test could exist that would be close to accurate enough that people would choose to abort their baby based on it, it would already exist. They've only in the last few years decided that enough evidence exists to say that autism has a large genetic component. With all the research surrounding autism, this means there will never, never be a genetic test that will diagnose autism with certainty.

  4. Lisa, I posted in my link list the latest genetic test for autism. It's nowhere near what the testing is for Down syndrome, but I believe they are getting closer.

  5. I hope you're right. Have you heard of the chromosomal microarray analysis? I'm sure you have. It isn't at all the kind of test that there is for Down syndrome, that really is just cut and dry, but it's a step closer to finding genetic predispositions for autism. And for some, even having an increased risk of having a child with any issues is enough for someone to abort and try again. It's sad. I don't think autism is ALL genes, either. Maybe in some cases. I think genes are the gun and the environment pulls the trigger, or at least I think that's what happened with Casey. He was always going to be autistic, but we saw a clear regression after he was ill after a bad reaction to immunizations (immunizations DO NOT cause autism. They don't). What I'm worried about is that they'll find subgroups of people with autism who's disorder is based just on genetics- maybe not one gene exactly, but a combination of genes. Tests will improve, like these latest ones, and I DO believe that there will come a day when you can get a prenatal diagnosis at least for having a genetic susceptibility to autism. Sort of like the BRCA genes. They don't say that you will for sure get breast cancer, but it means you have a much higher risk of developing it. Does that make sense? I wrote this also as a way to draw in the people who are here because of autism in their lives to see the side of Down syndrome that is tough to deal with. I really was jealous of the parents who had children with Down syndrome because I thought they were automatically heroes. I didn't get that there are A LOT of people out there who think I made a poor choice to have a child with Down syndrome (whether or not I actually had the choice given that we did not have a prenatal diagnosis- it wouldn't have changed anything, but you know). There are a lot of people who have a lot to say about the drain I've caused by letting this life go on. I get looks of extreme pity by people when they see Abby has Down syndrome. I wasn't prepared for that. I'm worried that people will one day feel the same way towards parents of children with autism. That in any small way autism will be "prevented" like they are trying to do with Down syndrome. Does that make sense?But given your level of expertise in the area of genetics and whatnot, I will TOTALLY defer to you. Wanna write a guest post for me about the subject of genetics and disabilities? I'd love to hear your point of view on any of these issues that relate.

  6. With two sons on the severe end of the autism spectrum I am asked this question quite a lot. What do I think caused it?To tell you the truth I have no idea but my hunch is that for my sons it was genetic. Their dad's family is full of socially awkward and brilliant people. In my own family I had an uncle with PKU.The only thing that gives me pause in assuming it's all genetic is the way the boys developed. Sam had issues from birth and was diagnosed very early. Noah developed completely normally up until his 2nd birthday and then regressed sharply and didn't regain those lost skills. That makes me wonder. If it was truly genetic wouldn't they have developed autism the same way? I have no idea.Like you I hope there is never a genetic test for autism. To assume that a diagnosis of autism (or down syndrome) is a tragedy is in itself tragic.

  7. Wow. Great post! I have no experience with autism, just ds, and I love knowing someone who lives in both worlds. When I was still a high school band director, I have a percussionist in my class who had autism. He was seriously my favorite student- and he was an AMAZING percussionist (seriously he knew more about it than I did!).Anyway, loved this post.

  8. My daughter has Tuberous Sclerosis Complex (TSC), autism and epilepsy. Around 80% of children with TSC have autism also. Right now they are doing a lot of research on people with TSC to find the connections with autism. I am hoping this will only help with early detection of autism and not a genetic test. Posting a link of what I am talking about but you might need to copy and paste in your browser. http://www.prnewswire.com/news-releases/autism-may-involve-disordered-white-matter-in-the-brain-135030988.html

  9. Brilliant post.I saw the link for this on Sunday's fb and honestly, before reading your post, was thinking, " Will was just tested for Fragile X", but I guess that's different. Plus, I was naively thinking it would be good to know just so my other children and relatives know they're carriers and not even thinking about the abortion aspect.Like you, it is something I never would consider.I was asked, no, told to have genetic testing when I was pregnant with my twins because of my advanced maternal age (36 @ the time).I refused. It wouldn't matter to me.But, sadly, you are so right. Too many people would just choose not to carry and that sickens me.Ps for the record, i have always held such a special place in my heart for down syndrome kids. We were actually in the process of adopting a little girl named Lilly when NJ state suddenly decided they had a better home for her. Still hurts now 😦

  10. Fragile X is completely different. While it is the leading cause of autism it is not something that can be tested for in-vitro. I have wanted to have my boys tested for it (because they have all the markers for it) but have not been able to get insurance to cover the test because it costs nearly $1200.00

  11. Such a great post Lexi! I have been thinking a lot lately about the differences I see in raising my Nephew with Aspergers and my son with Ds…They are so similar in many ways, and yet I tend to think my Nephew will have a harder time as he gets older than Russell will. Russell has a disability that people instantly see…They know right away by how he looks that he has Ds…So he is automatically accepted and people "get" him…Whereas my Nephew struggles to be accepted because he looks "normal" you cannot tell anything is different about him right away…So people end up not accepting him or are not very tolerant or compassionate towards him when they see he behaves strangely. It makes me sad…Our kids have so much to offer, just in different ways…I really wish people could see our kids for the amazing little souls that they are, worthy of life, just like anyone else.Again, loved this post!!

  12. You're absolutely right. It's a little sad to me. When we went to the Special Olympics booth at the Nickelodeon Day of Play on the National Mall a few months ago they just went CRAZY over Abby. I told them that Casey has autism, too, and no one said a damn thing to him! They all just wanted to get pictures with Abby, etc. I know there's a difference because she's a new cute baby, but really, who is the one that NEEDS people to love him? Casey. Abby loves without reservations. Casey needs to be loved first.

  13. A friend of mine made a good point on Facebook about it though. What if we DID know beforehand so that we could be super careful with diets and "toxins" etc? Would it be worth it then.Casey was tough from the very beginning. He SCREAMED all day, every day. He didn't sleep through the night until he was six- when we started medicating him. He did develop normally in a lot of areas though, he started to talk, made good eye contact, imitated etc. About fourteen months he had his regression. It was the very hardest thing I've ever been through. And, not to toot my own depressive horn, but I've been through some shit. I couldn't imagine watching it at 2 after things had been normal. I just couldn't. There was always something off with Casey. Guh. It rips my heart out just thinking about it.F. Now how am I supposed to make a funny damn meme?

  14. Oooh! Thank you! I love resources like these. I eat them up. That and poptarts. I bought a gigantic case of them yesterday. It was a decidedly poor choice.

  15. I'm surprised that they told you you could have genetic testing with your twins. I was told that I couldn't (Abby had a twin) because they come back effed up anyways. But the geneticist said there were ways around that (that was after the fact). I'm so sorry about the loss of your Lilly. My husband's Aunt and Uncle went through that with a set of twins. It does hurt, so much. I'm really really sorry. Have you looked into Reece's Rainbow?

  16. It's pretty crazy right!? Research for TSC can help people with autism, cancer, epilepsy, and a multitude of other things because TSC can effect all the major organs and they can sometimes detect it in pregnancy . They do a lot of medical trials with our kiddos. One promising one is for a drug called Afintor, it has started shrinking tumors on the kidneys and brain to reduce the need of surgery in some cases. They are also working on it to help with cognitive delays. Can you imagine if they are able to find autism early because of this?? So many kids will benefit so much with early intervention before the age of 3. And I am also a big fan of poptarts, smores and cherry…

  17. I'm a cinnamon fan, myself. Oh, and cherry. Cherry is the best.That's amazing. People don't get when they see fundraisers for rare conditions like TSC that the money goes to research that eventually helps much bigger causes like autism. I'm glad that Autism Speaks has helped with those studies because I have a feeling they're going to get us SOMEWHERE. Anywhere would be fantastic.

  18. I have a child with autism. But I came here when I searched for Down's Syndrome facial characteristics (folk art project). You have a beautiful daughter and a beautiful son. I have a beautiful young man who is autistic. Your post has given me a lot to think about. I love your passion, and I like your blog.Dixie

  19. Would I have aborted my fetus if I knew she was going to be born with autism? Nope. Would I have gotten her early intervention from the get-go? Absolutely. That’s why a prenatal test for autism would have been so helpful.

    That said, hubby and I made a choice after my daughter’s diagnosis: no more children. Not with a one in four chance of having another child on the autistic spectrum. Given the ticket we drew in the genetic lottery with our girl, I trust neither the Universe nor science with the outcome. Sounds harsh, but it works for us.

  20. Well said. I completely agree. I started out my pregnancy with our 2nd child being part of the siblings study for women pregnant who already have a kid on the spectrum. I figured….if I can help figure out how to diagnose earlier then why not? I dropped out of the study right after James was born and requested that they destroy all the samples and info they took from me….(who knows if they did or not). I did not want to be part of a study that might eventually lead to diagnosis of Autism in the womb for the exact reason you wrote about. James is now on the spectrum as well…but the study will never know since they have to follow the child for the first 5 years of life. I dread the quickly approaching day when all this comes down the pipe. We are so close.

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