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Tuesday, February 20. 2007
Genetics of Autism advances. BBC. A cure? Never. But, like Down's, will it be a new reason for abortion? No doubt.
A piece of the HIV virus seems stable enough to base a vaccine on. Good news for gays who hate condoms.
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I know what you mean about the possibility of eugenics raising it's ugly head with respect to the genetics, but I would respectfully suggest that had such tests been available to me, this would have given me additional time and opportunity to educate myself about autism before my sons arrivals. Forewarned can mean fore-armed.
Yes. They say 1/100 families. I don't know whether that is accurate, but it is common and an incredible challenge to families.
My nurse practitioner/midwife friend is very anti-abortion and she tells me these tests are great for exactly the reasons mcewen cited.
Also, a very religious family member just lost their baby at birth due to a genetic abnormality there was no fix for. If they had done the tests their doctors recommended they would have known the reality they were facing and they would have been much better prepared. The trauma was really terrible for them.
Nothing can prepare a family for a child's disability. If you are morally opposed to abortion, you know that you will love your baby regardless of their diagnosis, but that doesn't stop it terrifying you.
There is little to be gained for the child's benefit for a family to know in advance that the child will be disabled. The stress, grief, shock a bad diagnosis creates for the parents will likely harm the baby (stressed and depressed mothers' bodies have negative effects on the infants they carry). And even when a family is ready to welcome whatever kind of baby God blesses them with, it is hard to see how anyone is helped in the latter stages of pregnancy by a piece of tragic news. Perhaps knowing might encourage some parents to get therapy to deal with their own grief before the baby is born? But really, you never get over it....
Disorders like autism or mood problems are not always immediately clear, but become gradually apparent. Downs is immediately apparent, PKU testing after birth is non-invasive and improves lives, but something like autism may take months or even years to be diagnosed. In the meantime, how is the baby or anyone in the family harmed by not knowing? They will love and care for the baby and enjoy that honeymoon with a beloved new child unclouded by fears for the future. Let the family bask in blissful ignorance, and fantasize about their angel dancing in Lincoln Center or becoming President. Soon, too soon, ugly reality will break their hearts. What is the rush?
I have lived throught this. When pregnant with my third child, I was over 35 and hence had amnio recommended to me. I refused, because of the greater risk of miscarriage associated with having amnio, and because I would not consider aborting a child with defects thereby discovered. I knew that regardless of optimal care, healthy habits, etc. there are never guarantees of healthy kids. My husband and I believed that if you aren't prepared to love a disabled or otherwise less than Future World Leader child, you had no business having children. You get what you get. I said to my obstetrician that having a child with a disability was not the worst thing that could happen to a parent, having a wicked child would be. That if it happened, our God would give us the strength and heart to lovingly raise that child as we were already raising the other two healthy ones, grateful for the gift of children. That it would not be the worst thing in the world for the siblings, either. I asked their pediatrician's advice on this, was I risking ruining my healthy kids' life by this? Absolutely not, he said, as struggle and sacrifice build character.
As it happened this longed for baby died in utero in mid-pregnancy, at an age when plenty of people consider it acceptable to abort unwanted children. I was devastated. It reinforced my belief that all life is precious.
When I got pregnant again, the pregnancy was haunted by fear of the next baby dying. When he finally emerged, huge, ruddy, vigorous, we thanked God with tears of joy. The year before we had wept over our dead baby as we heard Christmas choruses of "Unto us a child is born, unto us a son is given..." But at this birth, we felt that God was merciful, gracious.
We did not find out until he was 7 that he was autistic. We knew that he was different, required special handling, and we repeatedly sought professional advice, and blamed our own parenting skills at first. But we cherished him, and loved him, and he loved us.
Being told that a child is autistic sometimes comes as a relief to a parent, to know (nowadays when parents are not blamed for it as Bettelheim infamously did) why they act so strangely. But for us it was like receiving a death sentence. Years of happily caring for him, helping him learn, suddenly seemed as if we had been wasting our time because of course "everyone" told us that autism was hopeless, incurable, and they didn't love anyone. We had sought out fairly traditional play therapy to help his social skills before ever he was diagnosed, and he had been in Sunday school since he was 2. He had benefitted from them, and we frantically tried to deny the diagnosis by saying piteously "But he makes eye contact with us, he loves us, he knows that Jesus loves him, and he shares his last cookie with the other kids...."We had signed him up for soccer (an unmitigated disaster, but he still has the cup his team was awarded), we had done everything with him that we did with his siblings.
Fortunately, before his diagnosis,when I had decided that the insulting pediatrician was wrong in blaming his behavior on our bad discipline, I had given up my own profession, and gone and got a more secure "mommy" job with shorter hours and good health benefits so we could have him more thoroughly evaluated and treated for whatever was wrong with him.
But the important thing to stress is that for the first seven years of his life we lived in hope. Ordinary parental dreams for their child, the child being treated normally, punished when naughty, rewarded when good, cherished in mundane ways.
There have been studies (I forget where) that receiving a diagnosis of autism depresses the family twice as much as being told that a child has a terminal illness with a limited time left. It is because of the horrible uncertainty, the fear of strangeness, the appalling behavior or just plain bizarre reactions. The fears of social ostracism, isolation. When autistic obsessions get out of hand, an entire family can be trapped in the house a prisoner of the child's need for sameness and security. The entire family became depressed, but we were mercifully so busy taking care of him, as his condition worsened, that we could not think about ourselves for several years.
I will not bore people with any more. But I am glad i did not know at first what lay ahead. I would not have believed when pregnant with him, that I would have been able to survive what God has helped all of us survive in the last years. God gives us what we have the strength to bear, and tho I would have loved my son anyway, it was better that I got to know him unencumbered by terrible diagnostic baggage.
On a day to day basis, our eccentric New England family has so many odd relatives that autism isn't that big a deal. But it did isolate us. Our extended family abandonned us and told us bluntly to institutionalize him. We ignored them and he has amazingly improved. But the violence at home is the worst of it (anyone who says their autistic kid isn't violent is probably lying)). If you are not rich when a child with this diagnosis is born (in other words if you can't afford to pay others to raise your child) one of the spouses will almost certainly have to give up their career to handle the daily crises, endless medical appointments. Our kids never had a sitter or in-house aide, we just adjusted our schedules so a parent was always available. The other spouse may have to pick a job (as I did) based not on their personal abilities or training or preference but based on which one offers the most generous health insurance and the least chance of being riffed for using that health insurance frequently.
Your other children will sometimes be neglected, sometimes receive more attention than kids in typical families, because you are all going to spend a great deal more time housebound in enforced family togetherness than most modern American families. You will have to spend all your money on therapy for everyone in the family at some time. But if you stay together, and if you are blessed by a loving church as we were, your child and you will thrive anyway. You will be amazed and inspired when you hear the siblings passionately advocating for others with disabilities, unbidden, fighting bullies, reaching out in compassion to others. The extra effort required to care for him has stretched us all thin at times, but it has formed the other kids into sensitive, compassionate and loving young people. Of course we would all rather have stayed rich, successful, popular and happy and healthy. I hate autism, I hate the stares, I hate being hypersensitive to rejection... but I love my child.
I will never be able to practice my profession, and I will probably be looking after him for the rest of my life, but he is God's gift to me. I am grateful, tho, that I was not overwhelmed initially with such a horrible diagnosis or I might not have dared to hope for the intelligence, faith, energy, humor and love that this child blesses all of us with. I might have thought he was a hopeless case and that mothering him would be penal servitude. What kind of a mother would I have been, then, during his most formative years before the age of seven?
Genetic testing gives me the heebie-jeebies. I fear that in future it will not only be used to scare or bully parents into abortions, but that it will be used to deny employment and health insurance coverage to people. I fear that in future insurance companies will insist, if a parent of a baby testing positive for some defect refuses to abort, that they sign away their right to any future insurance coverage for health care for that child. A genetic test can not tell how severely a person will be afflicted, or what other qualities that person may have. Pessimism about one's own or a child's health can become a self-fulfilling prophecy. And plenty of people who may test genetically fine may end up sociopaths, thieves, bimbos, or bullies---all far worse to have a child turn into than being labelled autistic.
How extraordinarily difficult, Retriever, and Loving. All the best to your son, you and your family.