A huge weight has been lifted from our shoulders this week. After six months of doubt and anguish, we’ve finally had the all-clear regarding ‘abnormalities’ on B’s MRI scan. I can’t begin to explain how much of a relief this is. As I’ve said in the past, I can just about cope with autism (most days), without having something else to worry about. At some point in the future I will look back on recent events and only then realise what a troubling and difficult time it really was. When you’re in the eye of the storm you’re not as aware of the extent of the damage. It’s only when you look back that you think, ‘how did we get through that?’. In recent weeks we have visited a neurologist and a geneticist who, having examined B and looked at his MRI, have found nothing to be concerned about (beyond his autism). I am so glad this is over. Unlike other aspects of my son’s condition, this has been something I’ve found difficult to face up to. I’ve read every book about autism I could get my hands on, but couldn’t bear to think about the possibility of further brain abnormalities. Only by ignoring it have I been able to get through recent weeks. There’s a lot to be said for blissful ignorance.
The story doesn’t quite end there though. The geneticist, having ruled out any concerns, asked if we would like to have some further blood tests carried out. These blood tests would enable the geneticist to take a closer look at B’s chromosomes and, possibly, identify any genetic abnormalities that may account for his autism. I don’t really understand the science behind it, but this test allows them to look at the shape and size of his chromosomes, rather than just count them (which is what a standard test does). At least, I think that’s what it does. The doctor explained that the test is not always conclusive, but can pick up genetic dispositions that might be indicators of likely health issues (e.g. kidney problems later in life) and, as I said, indicate the factors that might have caused his autism. It might also lead to finding likely genetic links with other family members. In this instance, parents might be advised to have a similar test. It might even extend to siblings being tested. I guess the gist of all this is the question, ‘does the autism gene run in the family?’ The doctor asked if we would like to have the tests carried out. “No”, I replied. “Yes”, said my wife.
We have very different points of view regarding this. For my wife, it is important to know more about the causes of her son’s autism. She has a need to know, a need for an explanation and a need to understand. She has spent far too much time blaming herself for our son’s condition. It doesn’t help that every visit to the doctor we’ve ever had involved questions about her health during pregnancy, B’s early development, breast-feeding and other details about (both their) medical histories. The focus is always on my wife, so it’s easy to see how she might question the extent to which she caused his autism. This notion is, of course, rubbish. My wife has never done anything but be a wonderful mother to her children. Still, you can see how someone might be inclined to blame themselves. I’m not suggesting that my wife is looking to absolve herself, but I can see how it leads to her needing answers, I guess. On a more pragmatic level, if there is a genetic cause of autism in the family, this has implications if we have more children (unlikely) or if our children have families of their own.
So I can see how my wife has a need to know, but this is not a feeling I share. I asked the doctor if the results would have any bearing on B’s future. Would knowing what caused it make any difference to how he was treated, cared for or educated? Would looking back have any influence on how we looked forward? The doctor confirmed that, unless something sinister was discovered, it is unlikely that the tests would change anything about the future. He’d still be autistic and nothing would change that. For that reason, I did not feel the need to know.
I do have another reason for not wanting to investigate further. Quite frankly, I don’t want to know if his autism is a direct result of my genes. I suppose this is not a million miles from the way in which my wife was thinking. The difference is that, whereas she wants answers, I don’t want to know. Believe me, barely a day has gone by when I have not asked myself, ‘is it me?’ I do not for one second think I am ‘on the spectrum’, but I have spent plenty of time considering it. I can identify some similarities between myself and B as babies and in our early years. I can also identify plenty of characteristics in myself that have something in common with aspergers or autism. I’ve thought about the possibility that I have some non-disabling asd traits waiting to be passed down the family line. I even did one of those online tests. I told myself that regardless of the result, I would not forget that the test was unscientific, unreliable and unhelpful. Then my results showed I scored higher than average for being ‘neuro-typical’ and decided it was quite a valid test after all!
I do not like the idea of tracing a genetic link back to a particular branch of our family. I don’t know if I’m being honest with myself about the reasons for this. Is it that I don’t feel it would be helpful, or is it really about feeling scared or guilty? How would a person feel about themselves if, as an adult, they found out such a fundamentally important thing about themselves or their family? How would it affect the way they looked at…everything?
The doctor did not push us to make a decision about the blood tests there and then, but we did. Looking at my wife, I knew I could not deny her the need to know. So we agreed to them. Despite everything I’ve said, I’m okay with this. My preference for blissful ignorance is not a better reason than my wife’s need to know, and I accept that.
The most important thing of all is that we left the hospital today knowing that he’s okay and that he’s going to be okay in the future. Knowing what’s going on inside my son’s head is still (and probably always will be) pretty difficult to figure out, but at least we know it’s nothing more serious than his autism. At some point we may have more answers about what caused his condition. We’ll cross that bridge when we get to it. For now, I have had the best early Christmas present in the world.