I’m pregnant and terrified my child will have autism, but I feel like I cannot express that to anyone without being viewed as a bigot
My nephew has “severe”/level 3 autism. He is in his 20s and will live with his parents for the rest of his life. The only food he can prepare for himself is cereal. He cannot be home alone and once school ended, his parents had to rely on state or federally funded day programs that may very well disappear with this administration. He is literally the best version of himself he can possibly be because his parents of course love him very much and would do anything in their power to make his life happy, but his life is HARD. Autism isn’t what makes him special, what makes him “him”; it is not a gift but a crippling impediment. I feel like anyone who dares to express the fear that their future child may have autism is immediately jumped on as being a bigot/not loving their child/etc., and to me that perspective comes from people who themselves have low-needs ASD, or only know people with low-needs ASD.
It feels like even within the autism community, you are only allowed to vent about how much pain and suffering are associated with having a child with high-needs ASD if you are actively experiencing it. Anyone else is accused of being an interloper who thinks the lives of children with ASD are meaningless.
My husband and I underwent standard genetic testing prior to conceiving, but testing for markers associated with ASD is incredibly expensive and basically meaningless unless your affected family member(s) have genetically inherited ASD. I could never ask my BIL and SIL to submit samples from themselves and their son for genetic testing (paid for by us) to identify any markers because it would be seen as cruel, offensive, and none of our business. I hate that I don’t have access to information that would have a meaningful impact on our own health choices and genetic testing of ourselves or the fetus because we don’t know what to look for. I don’t know what to do with this fear.