Category Archives: Autism

On Prenatal Testing

Autism, Bioethics, Conscience, Contraception, Family, Moralilty, , , ,

Thanks to a noninvasive prenatal testing procedure called NIPD, a test which can predict Down Syndrome with 99% accuracy, the number of children born with Down Syndrome worldwide has greatly been reduced.  This is not because they can repair the defective condition, but because it fashions the DNA into a bullseye, systematically marking them for death.  Between 2/3 and 4/5 of children with Down Syndrome are aborted, reducing the overall rate by 30%.  In other countries such as Denmark and Sweden nearly 100% of the children are aborted.  This, of course, is an example in which pre-natal testing has been used under nefarious circumstances, but not all of them are bad.  In fact, as more and more data pours in from the work on the Human Genome Project we should expect the ability to make more accurate pre-natal diagnoses on any number of conditions to increase.  With knowledge always comes power, but this power can be seductive unless we are guided by solid moral principles.

What makes navigating the moral waters upon which pre-natal testing floats particularly perilous is the fact that most of the tests themselves do not carry any moral weight.  There are some, like amniocentesis, which present significant dangers for both mother and child.  These tests should be avoided unless there are serious medical reasons for doing so.  But tests like NIPD and ultrasounds are practically harmless to both mother and child and become part and parcel of the standard of care.  The moral issue comes in with the intention of the parents of the unborn child.  In other words, what are they going to do with the information?

Why You Want to Know Matters

If they desire to know so that they can abort the child then it becomes morally problematic, even if they don’t actually follow through with it.  Knowing that this might be a real temptation, then they shouldn’t have the test.  On the flip side, a couple may want to perform the test so that they are better prepared medically and emotionally for parenting a child with serious medical needs then the test can be safely (morally speaking) performed.  There continue to be many advances made to in utero diagnosis and surgical interventions that these tests can often be life-saving.  Just this week the Cleveland Clinic announced that they had performed successful in utero surgery to repair Spina Bifida.  This obviously was made possible through pre-natal testing. 

Summarizing, The Ethical and Religious Directives for Catholic Health Care Services (1994) presents these principles succinctly:  “Prenatal diagnosis is permitted when the procedure does not threaten the life or physical integrity of the unborn child or the mother, and does not subject them to disproportionate risks; when the diagnosis can provide information to guide preventive care for the mother or pre- or postnatal care for the child; and when the parents, or at least the mother, give free and informed consent.  Prenatal diagnosis is not permitted when undertaken with the intention of aborting an unborn child with a serious defect” (50).

With abortion off the table, what are the guidelines we can use if the unthinkable happens and a child is diagnosed with a medical problem.  The Church speaks of avoiding “disproportionate risks”.  This assumes a sort of calculus on the part of the parents by which they weigh the seriousness of the disease against the risk of surgery.  This might include experimental procedures.  Provided that there is an acceptable amount of risk involved and the surgery is done for therapeutic, rather than experimental reasons, then it would be morally permissible to do so.  As the Instruction on Respect for Human Life in its Origin, Donum Vitae, puts it,  “[N]o objective, even though noble in itself, such as a foreseeable advantage to science, to other human beings or to society, can in any way justify experimentation on living human embryos or fetuses, whether viable or not, either inside or outside the mother’s womb” (DV I, 4). 

Not only is abortion not an option, but also those procedures which are not inherently therapeutic. Procedures designed to influence the genetic inheritance of a child, which are not therapeutic, are morally wrong.  “Certain attempts to influence chromosomic or genetic inheritance are not therapeutic but are aimed at producing human beings selected according to sex or other predetermined qualities. These manipulations are contrary to the personal dignity of the human being and his or her integrity and identity. Therefore in no way can they be justified on the grounds of possible beneficial consequences for future humanity. Every person must be respected for himself: in this consists the dignity and right of every human being from his or her beginning” (DV, I, 6).

Genetic Counseling

Genetic counseling before a couple actually conceives is growing in use and popularity.   The man and the woman each submit to genetic screening that gives a genetic profile enabling them to predict how likely it is that they have a child with a serious genetic defect.  Like the pre-natal testing discussed previously there is nothing inherently wrong with doing it.  What matters is what you are going to do with the information that is gleaned from it.  For example, suppose a couple finds one or both of them are carriers for some genetic condition such as cystic fibrosis or Tay Sachs, both of which pose serious risks to viability and lifespan of the child.  They may come to learn that there is a 50% chance that their child develops the condition.  Is this a good enough reason to forego having children and adopt instead?

This is one of those cases where the Church does not say one way or the other, although we can certainly apply Catholic principles to come up with a set of guidelines.  First, we must never forget that the goal of parenting is to raise children for heaven.  The most severely mentally handicapped child will only be so temporarily if they are baptized.  I say this not to over-spiritualize the issue, but to put it in perspective.  As a father of a special needs child this thought has brought me much comfort and has stifled my fears.  Having a child with something wrong with them is among the worst things a parent can deal with, but it is not the worst.  Having your child go to hell would be the worst.  Knowing that you raised your child and got them to heaven means that you have done all God asked of you.  “Well done my good and faithful servant.”  

This may not be a reason then to avoid having any children, but it might be counted as a so-called “serious” reason to postpone, even indefinitely, having more children.  If a couple has a child with many medical needs and knowing that they are at an increased likelihood to have another like them, they may legitimately decide to not have any more children, provided the means they use to avoid pregnancy are morally licit. 

Tolerating Autism

Autism,

April 2nd of each year marks a day of recognition of the millions of people worldwide who live with Autism.  It is meant to raise awareness of the incredible challenges that people on the Autism Spectrum face and to increase understanding of this disorder.  Insofar as it does that, it is most certainly a good thing.  But that can never be enough.  Instead the enlightened among us who advocate that we should just all accept our brokenness, have decided that it should be renamed “Autism Acceptance Day.”  Gone is the symbol of the Autism Puzzle Piece, sacrificed to the gods of political correctness, and replaced by the rainbow infinity symbol for neurodiversity.  What has always been recognized as a disorder, is now celebrated as being “differently ordered” (Fr. James Martin would be proud). Despite the best of intentions, this will only result in the worst of outcomes for people with Autism and someone must set the record straight.

Normalizing the Abnormal

The movement to normalize the abnormal and naturalize the unnatural is one of the most pernicious evils of our time.  Autism is not natural nor is it just “different.”  It is, as the clinical name suggests, a disorder.  It is the cause of a great deficit in the person’s life, handicapping their ability to give and receive love, communicate with other people and to see the world accurately.  Not only that, but it is usually accompanied by a whole gamut of other medical and mental health issues including sleep disorders and anxiety.    Only the most cold-hearted of people would be willing to “accept” Autism knowing that people with Autism suffer greatly, often in silence, solely because of it.  Perhaps the fact that they want acceptance of Autism says more about them than it does about Autism. 

It is so much easier to tell someone they are OK than to get involved in making them better.  This is why I find professional therapists who advocate for “Accepting Autism” particularly puzzling.  If Autism is something we should accept, then why do we give them any therapy at all?  Why would we teach them social skills, help them with their sensory challenges, and improve their communication if they are just fine?  It is apathy at best.  Just one more thing for us to show faux concern about and drop a pinch of incense to the Twitter god.

It might be the case that what they really mean is that we should be more accepting of people with Autism.  Of that, there can be no disagreement.  Because Autism is often out of sight, it is out of mind so that people fail to recognize that the person in front of them is afflicted with it.  Having a general awareness of how it manifests itself and habitually giving people the benefit of the doubt constitutes an act of compassion.  But the approach of “accepting” Autism actually has the opposite effect. 

The more you paint it with the “normal” brush, the more you open the door to intolerance.  For society to properly function, it must operate under a set of norms to facilitate cooperation and communication.  Norms keep us from descending into chaos.  Those who are capable of following those norms, we label as normal and we set our expectations likewise.  When an otherwise normal person does not adhere to the norms we must not tolerate it.  Now, when a person is unable to adhere to the norms, like say if they have Autism, then they must be met with compassion.  If you were to remove the “label” of disability, what is naturally expected of the other person rises and far from acceptance, the person finds nothing but rejection.  What our innovators are suggesting then harms way more than it helps in the long run.

A New Movement

And this is why rather than accepting  “Accepting Autism”, we should start a counter movement “Tolerating Autism”.  No matter how hard we try, we have to admit that Autism is a bad thing.  We should never accept bad things, only tolerate them.  We can never accept Autism but only tolerate it because the person who labors under the Cross of Autism is a beautiful and uniquely unrepeatable thing.  There may have been good things that came about because of their encounter with this disorder, but that is never a reason to accept it.  People who suffer from cancer often experience positive personal growth, but that would never mean we should accept cancer.  And just like we do with cancer, we should continue to work to eradicate Autism. 

Despite protestations to the contrary, our culture is absolutely obsessed with labeling people.  We label according to race, gender, sexual orientation, political affiliation, you name it.  The label then becomes the identity rather than something that forms who the person is.  People often rail against the notion that Autism is a bad thing because they see it somehow as a personal attack.  But that is to fall into the trap of defining a person by a label.   There are no autistic people, only people with Autism because Autism can never fully define who a person is.  They are so much more than simply repetitive behaviors and compromised social skills.   This is also why people advocate for the removal of the puzzle piece symbol because “I am not a puzzle piece.”  Well, in truth, you are not a rainbow infinity sign either.  The symbol is only a label for the person if you identify them with their condition.  Otherwise it is simply a symbol for a thing.

Tolerate Autism?  For the time being.  Accept Autism?  Never.

Shattering the Delusion

Autism, Natural Law, Virtue, ,

One of the hardest things for people on the Autism Spectrum Disorder is coping with the speed at which the world comes at them.  Hyper-sensitive to stimuli most of us can ignore, they will try to control the world around them by inventing their own explanations of reality.  Our youngest son does this often.  Usually he starts off on the right track, but at a certain point he will go off the rails.  We might indulge him a little, but once he hits a certain point, we have an expression to help bring him back—“you are now orbiting Mars.”  Some may think us cruel for not sharing his delusions, but it is love that refuses to leave him in an alternate reality.  By steadily refusing to join him in his delusions he is better able to cope with the world and his Autism.

There is a similar point to be made regarding people who identify themselves as transgender that unfortunately has been lost amidst the long drawn out debate over which bathrooms they should use.  The Family Policy Institute of Washington state released a video  that quickly went viral.  In this video, they interview a number of University of Washington students about their stance on Transgenderism.  They then try to make a reductio ad absurdum argument when the 5’9 male interviewer asks them whether they would agree that he is a 6’5 Chinese woman.  One gets a sense from the video of the inner struggle of the young men and women because they felt trapped by their own logic to the point that they are willing to agree to the absurd.

Certainly it is entertaining to watch, but what is most disturbing is their reasoning for agreeing with the interviewer—“No, that wouldn’t bother me,” “Um sure, I don’t have a problem with that.”  Put more pointedly, “it doesn’t affect me, so why should I care?”  Herein lies the underlying problem to the whole debate—mass indifference.  If a man wants to say he is a woman, then who am I to judge?  When I detect no harm to myself or those I actually do care about, then why should I object?

Miriam Webster defines a delusion as “a persistent false psychotic belief regarding the self or persons or objects outside the self that is maintained despite indisputable evidence to the contrary.”  Now read the Human Rights Campaign definition of Transgender: “one whose gender identity and/or expression is different from cultural expectations based on the sex they were assigned at birth.” In every other aspect of life, we would label someone delusional who says that their inner belief as “identifying” themselves as one sex when all of the objective biological evidence suggests otherwise.

When confronted with a person who is delusional, you can do one of two things.  You can either shatter the delusion in an effort to bring them back to reality or you can share the delusion with them.  As is the case with my son with Autism, it is much easier to share the delusion with the person than to actually step into their mess and help them sort it out, especially when I see their delusion as presenting no harm to me.

Bathroom Sign

But, can we even begin to imagine the inner turmoil of someone who looks like a boy, but feels like a girl?  Or is it simply easier to help their gender feelings visible?    There is a lot of data (see here and here for two studies) suggesting that something like gender reassignment surgery doesn’t actually make them feel any less conflicted.  The American College of Pediatricians has recently said that Gender Ideology does great harm to children.  In fact individuals who undergo gender reassignment surgery are 20 times more likely to commit suicide than the general population.  When a person realizes that the surgery that everyone said would help doesn’t, they can only conclude one thing—that they are beyond help.

This argument from apathy spreads like wildfire.  We can mutually agree to your delusions provided they don’t cost me that much personally—“to each his own.”  First it was gay marriage.  Now it is transgenders in the bathroom they identify with.  What will be next and when will the insanity stop?  When people are actually willing to stand up and help others wrestle with their brokenness instead of agreeing to embrace it.  When your ideology conflicts with biology, it is your ideology that needs to change.  Anyone who tells you differently is really apathetic.

Christians are often met with contempt as “haters” by LGBT supporters.  Hate in many ways is better than indifference.  In fact, hate is not the opposite of love—indifference is.  To love or hate someone means that they matter in some way.  Even hate recognizes the other as a person.  Apathy says the person does not matter and that they are on the level of a mere thing.  We tolerate things only as long as they do not present a real obstacle to my well-being.  Certainly we should not hate them, but hate is much easier to convert to love and compassion than apathy is.

Often when I confront my son with reality, it is met with hostility and name-calling.  In pointing out an alternate view to his reality, I have become a threat.  I know this, and yet I am willing to help him to come to grips with reality as it is.  Is this easy?  Absolutely not, but it is necessary for his own well-being.  Similarly we need to let those people suffering from gender dysphoria know that we oppose these bathroom bills not just because it opens the door for sexual predators and not just because it can create a great deal of personal confusion and angst for our children when they have to use the bathroom or change in front of a stranger of the opposite sex (even if there is no malice on their part).  We need to let them know we oppose it because we want to help keep them rooted in reality.  The shame they feel in using the bathroom can be good—it can help them recognize their true identity, the one that God gave them and stamped into their very being.  On our part we have to be willing to take the hostility and name calling.  That is the only real way to fight apathy—through self-giving love, which is what they most desperately need anyway.  We are now orbiting Mars, who will bring us back to reality?

Unlocking the Puzzle

Autism

I hate Autism.  I can never say that enough.  Because of the way that it attacks children and causes such suffering in them it is one of the nearest things to evil incarnate in this world.  My son Anthony has Autism and like most kids on the Spectrum, Anthony has a tipping point.  Often we cannot tell when he is about to reach it, but there is no doubting once he does.  One morning when we were away on vacation and on our way to Mass, Anthony reached it.  The stress of no structure on vacation, going to Mass in a new place and not having his usual “transition items” he carries with him to Mass was way too much.  This particular morning he decided that it was me that was the problem.  It began with a litany of hatred—“I hate you,” “I am going to kill you” and then it got physical.  He looked for something to throw at me.  First a shoe, then a sock, then a pencil and then He found a metal spray can and with pinpoint accuracy hit me in the head.

When he rages like this he is so completely out of control that we have to restrain him or let him tire himself out.  When we got to the Church I left the car with my other boys and went into Mass.  Once he no longer had the object of his rage in his sight he was able to calm down.  After he came into Mass it was as if nothing had happened.  Afterwards, we got back into the car and started home.  About 30 minutes into the ride, he asked for something to eat.  I gave him a snack out of our snack bag and he looked me in the eye and said “I am sorry Daddy.”  It was all I could do to choke out “I forgive you” before the flood of tears came to my eyes.  I looked at my wife and her eyes were flooded too.  It was not just the fact that he said he was sorry and truly meant it.  That is huge for any kid with autism.  It was why he said he was sorry that made me cry.  He said sorry because he had experienced my unconditional love.  The fact that I gave him something to eat triggered in his heart affection for me, but he also knew that he had somehow rejected that love even if he was out of his mind when he did it.

I cried not only because I was happy he was able to grasp something that I never thought he would. It touched my heart even more deeply because it revealed something to me of God’s Fatherhood and His love for me.  I was able to see that even when I am sorry, it is first because he loves me and shows me His love.  It is the experience of His love that causes me to seek forgiveness.  The first movement is always His and He never ceases to be moving toward me.  I simply have to allow Him to touch me.

There are hundreds of more stories like this.  Each time Anthony does something that seems so simple for neuro-typical children I am utterly amazed at how wonderfully made Anthony is (Ps 139:4).  I take nothing for granted.  Every step is a giant step.  I live a life of gratitude for so many “little things.”  There have been so many blessings in our lives because of Anthony’s cross.

Autismawareness

Some among us might look at the blessings and assume that Autism itself is a blessing.  In fact there are many parents who have children on the spectrum that say exactly that.  This is partly a means to help them cope and partly because things like Autism are so connected to their personality that they think removing it would somehow change who they are.  To adopt either of these viewpoints however makes it about me.  It is about Anthony and kids like him.  My heart aches when I see him struggle.  It aches when I know how deeply he regrets his loss of control and thinks everyone around him hates him.  Sometimes my heart even breaks and I think Autism has won.  The pain of watching one of my children suffer has left me forever different and wounded.  But this is about Anthony.  It is him that suffers with it.  He is Christ, I am merely Simon of Cyrene.  I refuse to pretend it is otherwise.  I will not ask Anthony to come down off his cross by pretending it is not a cross.  He is a suffering soul and it might just be his cross that saves me.

There is only one reason why I can see Autism with such clarity; it is because I know at the very core of my being that God is good.  Nothing will ever change that.  The devil can use Autism to shake that but God just uses His divine judo to convince me more deeply of the Truth.  If He can bring good out of the darkness of Autism then He really is all-powerful.  If He can take an arrogant, judgmental fool and make Him compassionate through suffering, then He is all-merciful.  If He can make an impatient man patient then He is all-wise.

Anthony is often ostracized because of his strange behavior.  Kids mock him, other parents avoid him.  Even many of my own friends can’t handle being around him because he is an uncomfortable reminder that they too could have child with something wrong with them.  As hard as these things are, they are mere drops in the bucket compared to the acts of charity that he elicits in others.  His brothers give up so much but will be incredible men because of him.  They are compassionate with him, but fight with him and treat him like the annoying little brother that he is.  They too refuse to let Autism define him every time they see him as the little brother who bugs them.  Brotherly love is beautiful when you catch these glimpses of it.  Especially because all their friends “get” Anthony and show such gentleness and compassion that Anthony calls them his own friends.  His therapists show me the beauty of living out a calling from God.  It is no mere job for them, they love him and boast of his miraculous turn-around as if it happened to their very own flesh and blood.

And his mom?  Where could I even begin?  If I were to give advice to all married men, it would be this:  God has put you in the foxhole with one certain woman for a good reason.  Cling to her and He will show you exactly why He yoked you together.  You will be utterly astounded as to how tough the so-called fairer sex can be and how beautiful a mother’s heart is.  But you will miss out on this if you run away from the cross.  You will forget who the real enemy is and you will forsake the one person who God has given to you for this battle of life.  Your cross may not be autism, but it will come, and even the Son of God did not carry His alone.  The cross will strengthen your love for each other, but you have to let it.  Gentlemen, love your wives, as Christ loved the Church.  There is no other way.  It might seem impossible because it is.  Let Him do it in you, and you will find the happiness that comes only from desiring to be a gift to your wife.  She has the same desire, do not fear to receive her gift.  God will help you take care of it.

All this and more, but I still hate autism.  God is indeed good (and that is ultimately the last word).