Genetic Counseling and Autism
November 9, 2006 by Kristina Chew, PhD
Filed under Health
Genetic testing and counseling provide answers to certain “important questions,” notes an article in The Southern Health Magazine. Autism is among the reasons cited for a referral for a pediatric genetics evaluation.
For example, if you have a certain genetic disorder, what are the odds of your baby inheriting it? “When you know the odds you may change your mind about having the baby or be better prepared in terms of getting support systems in place,” says [Dr. Pradeep] Reddy, pediatrician at Heartland Regional Memorial Hospital, in Marion, Ilinois].
The Southern Health Magazine article attempts to “explode the myths” concerning genetic testing and abortion. This particular topic has made pre-natal genetic testing a fighting word in discussions about autism, among autistics and the parents of autistic children in particular. The Southern Health Magazine article quotes a number of medical professionals in considering these issues.
“Often parents-to-be decline genetic testing thinking they are invincible or that we will ask them to abort,” says Reddy. “Both reasons are wrong and I cannot stress that enough.”
Genetic testing has nothing to do with abortion, although the parent does have the option of legally terminating the pregnancy, if a fatal or incurable condition is discovered during prenatal genetic testing.
“We do tell them it’s available,” says [Dr. Dean G.] Huffman [a perinatologist with Cape Perinatology Services at St Francis Medical Center in Cape Girardeau, Missouri]. “But we don’t encourage or coerce them in any way to follow that path. We are morally responsible to tell them what their rights and options are. But it’s really up to them to make a decision.”
It is indeed up to parents—and this is precisely why it is more than important to educate new parents and, indeed, the general public about all that can be done to help an autistic child have a good life and achieve their full potention. It is why it is so necessary to allay new parents’ fears of their child developing the dread disorder, autism. It is crucial to spread the word that, while life raising an autistic child has its difficult and ever-interesting moments (later on tonight, I will be relating what happened in the food court of a mall where a friend and her three daughters, Charlie and I were eating dinner), it is a very, very good life.
And this very point needs to be heard by genetic counselors, by parents undergoing prenatal genetic testing, by all of us as new technologies are developed and new scientific discoveries made that we cannot even yet imagine. Genetics testing and counseling does provide answers to many important questions, but raises many, many more.
You make a really good point.
Autism has there own culture.
Why would you want to wipe out a culture, instead of embracing.
Everyday there is someone comming up with more and more ways of giving them tools to have a quality life.
In a indirect way it reminds me of the deaf community with the argument about cochelar ear implant surgery. They feel this procedure takes away from their own community.
I have heard the comparison to deaf culture, especially in regard to cochlear implants and the use of ASL. There is plenty to be learned from Charlie—-plenty that I would never otherwise have known.
The 1 in 166 club is already a community, not hidden but thinly disguised, judging by what I have been reading in this new world [to me] of blogs. Cheers
http://whitterer-autism.blogspot.com
I think it is naieve to say that genetic counseling has nothing to do with abortion, but that is not the point I want to make here. I think the issue is not merely pro-choice/anit-choice. The issue is where are we putting out resources. And how are we failing the disabled community in doing so.
Already families of disabled children have to suffer financially because of lack of available resources and lack of funding to pay for such resources (by resources I mean therapy, schooling, medical equipment, you name it).
The lack of financial support results from our society’s lack of regard for persons with disabilities. We don’t want to see them, we don’t want to go to school with them, we don’t want them in our workplace, and it takes government mandates and federal laws to force us to scrape the bottom of the barrel and give them their fair share. And for that, we make them (and their caregivers) fight and fight and fight.
As a result, having a disability becomes an increasingly horrifying prospect. When we worry about the physical/mental/social challenges caused by a disability, we are also worrying about society’s lack of regard for the person.
So we put our money into genetic research. We say by identifying the genes responsible for the disorder, we can isolate the cause and come up with treatment. Sounds promising. But finding the gene and finding treatment are usually decades and decades apart. Look at Down Syndrome. How long have we known the chromosomes responsible for this…about 30 years? And where is the cure, where is the treatment?
Whether it’s Down Syndrome or autism, the need for help TODAY is tremendous. A genetic test won’t help the “1 in 166″ that are already diagnosed. That “1 in 150″number should set off alarms that SERVICES and EARLY INTERVENTION must be a priority. Treatment makes a difference.
But we push more money into genetic research. While children go untreated, families struggle to keep it together, and schools fail miserably at educating our kids.
The moral issue for me, is not about abortion (that is for another topic). The moral issue is how well we are taking care of the needs of disabled people today by giving them the necessary help. And if the money we raise is going mainly to genetic research, then we are taking money away from children in need.