Fear of Diagnosis

Migrant Mother, Nipomo, California

Image by George Eastman House via Flickr

As a teenager and young adult, I often found myself wrestling with whether it was worse to find out the truth, or be left wondering. Sometimes it was in regards to things people had told me, such as that someone I cared deeply about had done something horrendous years ago; did I want to know the truth or was it best left alone? There were times when the questions that arose were serious medical ones; is that mole cancerous, do I have a psychiatric illness, do I have AIDS..? (The answers were no, no, and no, by the way.)

I didn’t want to find out something was wrong with me; my life seemed hard enough without adding to the load. I often tried to hide from reality, reality was scary (I was a rather anxious and over-thinking child). The problem was that “not knowing” doesn’t take away the worry – the usually pointless worry – that plagues you when you’re living with doubt. I underestimated the impact that worry can have on both mental and physical well-being. In my mind the choice was “worry about it” or “live with the horror of knowing I’m doomed”. Of course I was largely discounting the much higher likelihood of finding out there was nothing wrong with me, and therefore the option of  neither living with worry nor living with knowledge of some horrible condition.

But there was an extra dimension that my young mind didn’t full comprehend; that if something horrible was wrong with me, the knowledge would be the first step to making my entire life better because I could address and perhaps fix the problem. I was too fixated on the “finding out”; the diagnosis bit. But a diagnosis is just the first step in a long journey. There is grief when you find out something horrendous will affect the rest of your life, but grief is a stage in experience, not the entirety of the experience.

Years later, by the time I’d given birth to my first son, I’d learnt much of that lesson. I’d been in many situations that had taught me that not knowing, always turned out to cause much more worry and pain, than knowing. Especially when you have a vivid and fertile imagination. So when my son’s behaviour and development was increasingly concerning, I didn’t “not want to know” whether he had autism or something else, I just went through the steps required to find out. Yes, he had autism. Yes, it was devastating. But the diagnosis was only the first – and necessary – step, to making both his and our lives better. The diagnosis gives you access to funds, services, help and understanding, and makes you part of a community of people going through the same trials.

Since finding out the diagnosis, I have encountered many situations of parents who suspect their child has autism, but they don’t want to know for sure. The most recent one was via a parenting forum that I frequent. The mother described her child’s behaviour and said she had seen a range of natural therapy providers, but she still didn’t know what was wrong. It looked very much like autism to me, and I said so and encouraged her to rule it out. She said that if it was autism, she didn’t want to know, because her family had a history of autism and she didn’t want her child to have the condition too.

As if not getting a diagnosis, means her child doesn’t have the condition.

This attitude is ridiculous and pointless and upsetting, but I knew telling her so would just put her on the defensive and do nothing to encourage her to get the answer. So I came back with some of what I’ve said above: That the diagnosis is just the first step, and opens up avenues to help and funding. I wished her luck in her endeavours to find answers, whatever those answers may be.

It occurs to me that there is a very serious difference between being afraid of getting a diagnosis about your own health, and being afraid of getting a diagnosis about your child. When it comes to children, you can’t choose to worry instead of know. You can’t choose to hide your head in the sand out of fear of how you’ll feel if you knew for sure.

There are other factors that might be at play when a parent refuses to take their child along to get a suspected diagnosis. Maybe they don’t like labels, or they don’t think the condition in question is a genuine one. I can understand these arguments (though I don’t find them persuasive), as long as the parent is otherwise doing everything they can to help their child cope with the challenges it faces.Though getting the correct and best help available, as fast as possible, is always assisted by a diagnosis.

It seems to me that the huge benefits from getting a confirmed diagnosis, outweigh the sorts of concerns that parents put forward for not getting one. If you’ve chosen to not get your child diagnosed, even though you suspect they have autism, I’d be interested to know why. Similarly, if you know other parents who have made this choice and given you the reasons why, I encourage you to share those too. Is there a powerful argument against diagnosis that I am over-looking… or do the parents who refuse to find out, need a wake-up call to the reality of the responsibilities – as hard as they often are – of being a parent to a child with special needs.

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2 Responses to Fear of Diagnosis

  1. Ashley T says:

    Hi! I found your blog through Just Another Autism Mom. My name is Ashley and I’m from MN. My husband is working on his final research project for his PhD in Clinical Psychology and he is researching ASD in children. If you would be so kind, could you fill out a really quick survey to help in this research? The survey can be found at https://www.surveymonkey.com/s/ASDStudy
    Thanks for your consideration, I really appreciate it.

    • I’m usually quite happy to be part of these sorts of things, and did click through to take part, but it insists on saying which state in the USA I am from. Since I’m in New Zealand, that made it a tad tricky! So I didn’t complete the survey, rather than provide false data. I do wish your husband the best of luck with his PhD, it’s always good to know people are trying to understand and help our children 🙂

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