Are Increasing Rates of Profound Autism Affecting Fertility?

For some time I've been wondering about the impact of severe autism on the fertility rate.

I work with kids who have autism as an ABA therapist (applied behavior analysis).  I raised a son, now a young adult, with autism.

Many of us now have someone in our own family who is autistic. And just about everyone knows someone through friends, neighbors, co-workers, or church who has autism. 

There's been a dramatic increase in the number of children diagnosed with autism over the past twenty years, with the latest statistic showing 1 in 31 children, aged 8 years, as having been identified with ASD (autism spectrum disorder) according to the CDC, up from 1 in 68 in 2010.

Alarmingly, the numbers of kids (and now young adults too) with more severe autism are increasing percentage wise. Referred to as, “profound autism,” the diagnosis now, “applies to about a quarter of people on the autism spectrum.” 

These are people who require incessant supervision, can have self injuring or destructive behaviors, and can cause safety issues.  This is the segment of the autism population we almost never see out in public.  That's because parents can't take them to the park, the beach, the grocery store, a backyard barbeque, a family wedding.  They're not even capable of being brought to a special needs Mass, or the “respite nights” some parishes now have, and most of these kids are not in mainstream schools.

I have no idea if some parents choose not to have another child when they already have one with autism, especially profound autism.  I’ve never heard anyone say they’re hesitant to have a child because their autistic niece or nephew is so all consuming or that their friend’s child has bizarre behavior and is so difficult to manage.

There are no pre-natal tests for autism, fortunately.

Looking on the internet, I haven’t come across anyone asking parents who say they don’t want children, or don’t want another child, about their thoughts on the chance of having an autistic one. So as far as I know, there’s no research on this possible factor.

I just think, with everyone seeing more of these challenging behaviors in the community, it wouldn't be shocking if autism is a concern for would-be parents.

One boy I work with is always home with one parent while the other goes to his sibling’s ball games, friend's houses, restaurants, stores, beach, etc.  He jumps up and down, runs and crash dives onto furniture, bites his knees and wrists, hits his head to walls, and although he's non-verbal, makes sudden loud, strange noises. His parents have had plumbers in a few times after something got flushed down the toilet.  They were forced to install an unusually high fence around their backyard because their autistic son kept trying to climb over it.  Doors have to be locked so he doesn't run out. These are not children you can simply tell not to do something, or maybe give a punishment here and there for disobeying until they get the message.  They simply don’t understand 

Another child I work with refuses to even try the vast majority of foods. He tears up mail, books, newspapers – any paper at all – into tiny shreds no matter what activity he’s offered as an alternative.  He goes around the house unplugging TV’s, computers, phone chargers, etc., and likes to scribble on walls with any pen or marker he can get his hands on.  He cannot be taken outside without a harness on because he’ll bolt into the street, into a neighbor’s house, or a parked car. He wears diapers at 9 years old.

Needless to say, most of the parent’s focus and energy is on the child with autism, and while I’ve only seen great dedication and love from both parents and other siblings, it is an exhaustive existence.

The families that I’ve seen who are managing the endless challenges of autism and keeping their head above water are the ones who have a lot of family support.  Grandparents, aunts & uncles, and close friends often give these families a few hours break here and there, drive siblings where they need to go, run to the grocery store for them. 

The families I see that never give up, never walk away are also the ones who go to Mass (parents going separately unless grandparents or someone else is home with the autistic child), who pray for constant guidance and patience and some kind of relief, and who offer up their difficulties to God even while they can’t understand where the autism came from or what the future holds for their child.

Getting to the bottom of the autism mystery is crucial so we can address whatever factors are causing the enormous surge.  In the meantime, are couples hesitating to have a child or another child because the see the increased chances of having a child with autism?

I think it's helpful to make the point that having a child, or adopting a child, is a leap of faith.

A couple can have a completely typical baby.  That baby could be diagnosed with cancer at age 4, or die in a tragic car accident at 7.  As a teenager he could get involved with drugs or crime.   There are no pre-natal tests for any of these possibilities either.  But the chance that a baby will bring love and joy to the family is far higher than the chance of having autism.