Should we test for autism in pregnancy – my views

This morning with a group of friends we were discussing our children, all of whom go to the same school and have autism and their births. We had been discussing their different additional diagnosis’ and how they had come about and whether we would have more children. Whilst discussing this we got onto the topic of whether in the future tests will be available during pregnancy for autism and how we felt about that. As Ben is now 12, almost 13 (aaaaahhhh!) things have changed a lot already in the tests and scans available so I can imagine they will change more and there will one day be a test for autism but would I have the test in a future pregnancy if the test was available? Whether you agree with my views or not I hope this post helps you understand my feelings and give you a little insight into my life.


In the photo above Ben had not been diagnosed yet with autism but he was slower than other babies to develop and I had my suspicions there was something different about him. In hindsight the differences I had noticed were autism. Ben had hated loud noises from birth in a different way to other babies. He had struggled with eye contact and rarely looked at anyone. I loved Ben just as much then as I do now and these things did not matter they were part of who Ben is but they still made parenting hard.

There is no doubt about it parenting a child with autism is harder than parenting a child without any disabilities however as Ben is my only child I have no direct comparison. There have been some really tough times with him over the years but he is my whole world. When I was pregnant the only test available was the amniocentesis for downs syndrome which is chose not to have. This was because it held a risk to the baby and was not guaranteed to be accurate. I was also fully aware that even if my baby didn’t have downs syndrome there was no guarantee there would not be another problem.

 

As it happened Ben was born not breathing and had to be resuscitated. Ben was diagnosed with a heart murmur at a few weeks old and then with autism a few weeks after his second birthday. Would I have been making a claim for medical negligence if I had tests that showed my baby had not got any problems and then this came to light? Of course not because my child is my child and I know that no tests are ever 100% accurate. Ben has since gone on to develop or be diagnosed with multiple other issues but none of those could have been predicted and even if they had been would never change the way I feel about him.

If there was a test would I have it for a second baby? Whilst there have been some tough times with Ben over the years and now as he is starting puberty and almost a teenager I doubt they are over yet I wouldn’t change him. Ben is who he is and even if I had known he had autism before he was born I wouldn’t have known how much of a comedian he would turn out to be, I wouldn’t have known he would have issues with his legs, and I wouldn’t have known he has tourettes. What I am saying is the test can never possibly tell you everything so I personally wouldn’t have it. I also wouldn’t like a 3d scan unless for medical reasons as would rather wait to see how the baby looks.

Even knowing how hard some aspects of parenting Ben have been I wouldn’t chose a test for another baby because I know that so many things can not be tested for and equally we never know what illnesses a child could contract. Parenting is hard and personally I think that if you would test for autism and consider aborting an autistic baby then you have to question if you are ready to parent because any number of conditions could make parenting harder and what would you do then? That however is just my opinion, and at present there is no test anyway (except for genetic conditions which show on chromosomes that have autistic elements). What are your thoughts? Would you like to see more tests developed for learning difficulties and similar?

 

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