Tuesday, March 18, 2008

Trying to Get Down to the Heart of the Matter

First, thank you to everyone who reached out to me recently with a kind word or description of your own experience. I felt (and still feel) so much love and support from all of you and feel blessed that I have you in my life.

The major issue that I have been struggling with is that I believe that John Dear has Asperger's Syndrome, a neurological disorder on the autism spectrum. Commonly misdiagnosed as ADHD (Attention-Deficit Hyperactivity Disorder), those with Asperger's "show marked deficiencies in social skills, have difficulties with transitions or changes and prefer sameness. They often have obsessive routines and may be preoccupied with a particular subject of interest. They have a great deal of difficulty reading nonverbal cues (body language) and very often the individual with AS has difficulty determining proper body space. Often overly sensitive to sounds, tastes, smells, and sights, the person with AS may prefer soft clothing, certain foods, and be bothered by sounds or lights no one else seems to hear or see."

This definition doesn't even tell the half of it. John Dear has very few social skills, has trouble remembering to look people in the eye while speaking or being spoken to, has great difficulty in interpreting facial cues, and has many problems in making/keeping friends. He is quite literal and can be very rigid in his thinking. They say that marriage takes work, but being a wife to John Dear is much more than a full-time job.

As a kid, JD was diagnosed as having ADHD, but I've always felt that his issues were more than just ADHD. After much talking and planning, I was able to discuss this openly with JD in a joint therapy session with his therapist and mine. I framed my talking around the issue that JD has been misdiagnosed and that his prescribing doctor (not his therapist) has not treated him therapeutically, medically or medicinally according to the protocols for his actual issues. Side note: I think that she's barely treated him at all beyond seeing him as a cash cow that she never has to deal with besides writing 2 prescriptions every quarter. I believe that her "treatment" borders on malpractice.

JD has agreed to undergo diagnostic testing and a psychopharmacological review of his current medications.

But, so what? So, he was misdiagnosed with something, where's the issue? Here's the crux of the issue (not yet discussed with John Dear): supposing we can obtain JD's sperm for use in an IUI, should we use it? Should we run the risk that our child/children will also have Asperger's and its attendant difficulties for the child and the family? Asperger's can be carried genetically, but is not always done so. Additionally, Asperger's can be passed from mothers to their children, but also from fathers to children, so it is not strictly an X-chromosome-linked disease. Currently, there are no genetic/blood tests available to determine whether or not a person has Asperger's; it is all based on diagnostic testing.

Perhaps we should look into donor insemination, a method that would reduce the risk of a child developing Asperger's or any of the medical issues (yeah, he's got more) that John Dear has. I love my husband. No matter what, I want him to be the father of our family. I think he would be a wonderful father and it's one of the reasons that we married. I don't want to hurt John Dear, but as my therapist and I discussed previously, having a healthy baby is more important than potentially hurting JD's feelings.

I can't really come up with a good concluding paragraph to this post, so I'll just stop here. I'm open to and would welcome hearing your thoughts on the matter, whether you've only just stopped by, read this blog regularly or know me in the real world.


Jen said...

Yeah, that is a tricky one. It would be "easier" to use donor sperm anyway, right? Do you think that swings the balance at all? I really don't know, it is hard to weigh the risks of issues being possibly passed on.

CC said...

This is a biggie. You are absolutely correct that it is often misdiagnosed as ADHD. For Autism Awareness month next month, I think I'm going to run a whole series on comparing and contrasting ASD with some other similiar, but not similar diagnoses (such as ADHD). When there is a very clear genetic link between child and parent, I've only seen in go from father to child (almost always son). When we were going through infertility treatment I didn't really consider donor insemination, because even though my husaband has a myriad of medical issues (heck the poor guy just had surgery yesterday), you have absolutely no guarantee that a donor wouldn't deal with these exact same issues, or maybe even more. Asperger's syndrome can make life more difficult. But as you know, you can still be a very functioning adult with a job and family of your own with this diagnosis. At least you will know what to be on the lookout for if you have biological children and can get them early help if needed. That said, why did I adopt instead of pursing AI or ICSI and have no idea of genetic history on either side of the family??? Ah, that is a whole huge issue and story that I'd be happy to discuss at another time ;)

Sunny said...

Praying for wisdom. HUGS!

Io said...

I don't know enough about aspergers to really offer any good advice, just my sympathy.
At least if this is what JD has you can deal with it appropriately, instead of trying to deal with it with ADHD meds.

Fertilized said...

I am not versed in any of these questions or scenarios. I just send warm hugs and good thoughts to you!

annacyclopedia said...

Oh, honey! I just came over to leave a funny comment in response to one you left me (I misread Annaism for animism!) and find you're struggling with something this big. This sounds really really hard. I've known people with Asperger's and while it's true they can function in life, it definitely makes it more difficult - I don't know if it is something I'd want to risk passing on to my child when there are already issues preventing getting pregnant "the easy way." I guess for me, IF has presented me with an opportunity to really think about these things because I couldn't just rush in and get pregnant. Although my choosing DI over possible TESA and then IVF/ICSI came out of a different set of circumstances, for me it is very much a choice. And there's a whole lot that went into making that choice - some of it is still ongoing.

What I really want to say is I can understand some of what you're facing vis-a-vis the choice aspect of it. And I'm here if you need me - my email is in my profile.

You'll be in my thoughts and prayers even more than usual.

Almamay said...

I've known about Aspergers for many year as two of my nephews are affected. I hope the diagnostic testing helps support both of you if you do get a positive diagnosis. I know from experience that diagnosis can really help the situation.

You sound like you love your DH very much and he loves you. People with Aspergers love as deeply as those of us who don't have it, they just have a harder time expressing it. Actually, the world is full of people who have difficulty expressing themselves properly.

I'm in no position to offer advice on the donor question, just support.

MrsDrink said...

Ack, I wish I had more advice to give. I'm sending trillions of hugs and good thoughts your way though!! (((HUGS)))

Anonymous said...

I wish there was an easy answer for this... I really do. I've often wondered the same thing about my husband, and his mother (however completely psychotic herself) has agreed. Mark is in therapy now for his anxiety and panic disorders and strange as it seems, that seems to be helping with his social issues. He doesn't fly off the handle quite as quickly and seems to be a bit more understanding of the feelings of others, even if he doesn't understand WHY people feel that way. Have you ever read about Indigo Children? And I'm talking about Indigo Children in the late 60's, early 70's... Not the people now who claim that their kids are psychic and all that jazz... Go read about it and see if it makes any sense to you.

*Hugs* friend. These are tough times. Every decision you make right now is going to be second and third and fourth guessed. Have faith in yourself. You are stronger than you know.

Meghan said...

Yikes...those are a lot of tricky issues.

For what it's worth, I teach in a program for students on the autism spectrum (both aspergers and autism). We definitely have some parents that I think have been misdiagnosed and others that are completely neurotypical. And unfortunately, with the rate of ASD increasing (last years CDC report had it at 1 in 150 births, 1 in 94 male births), there really is no guarantee that donor sperm would change anything.

Gosh...that sounded all doom and gloom, I completely didn't mean it that way. Anyway, if you want any more info or resources, email me, my address is on the DC group contact page

and good luck...why can't any of this crap be easy??

Lisa Sharp said...

http://www.babelnation.com/index.html Has german but I haven't looked to see if it's any good, I didn't like the Italian as well as the site I found but it was pretty good.

JJ said...

While I dont have much advice to give on the subject, I just wanted to let you know Im thinking about you as you navigate this possibility--you are in my thoughts!

Antigone said...

My line of work seems to attract Asperger types. They've all found their niche and have full, successful lives. They just come off as shy and nerdy. I find them more interesting than bland extraverts.

STE said...

I'm sorry you're going through this -- it's hard enough getting a diagnosis, let alone one that may affect your family-making decisions.

((This is totally amateur assvice from someone who used to work in special education and has friends with kids with AS. Please disregard as you find appropriate. ))

That said, I've had a (very) little experience with both adults and children who have an ASD diagnosis. It does make things more difficult, but as a previous commenter referred to, getting a diagnosis can have a positive effect. THEN you can get the services you/he/they need, as well as services for the rest of the family in understanding what's going on and how to make things easier for everyone -- often small changes.

Wishing you strength as you work this through. Take care.