On our Disney flight, there was a little boy and his mother from the Make-A-Wish foundation. They were getting a great deal of support from the crew and passengers.
A little jealous part of myself couldn't help but compare our situation with theirs. They are treated with compassion, their meet and assist was prompt and ready for them (whereas ours vanished into the bureaucracy).
I felt bad for my reaction, after all, you don't get to make a wish unless your child is dying. I'm sure the parents would give anything in order to get more time with their child.
But it made me think about the difference between a terminal condition and a lifetime one. Autism doesn't shorten anyone's lifespan but it certainly affects the quality of life for everyone involved. And it seems like parents of children with autism have to fight for everything and justify their requirements a lot.
A perfect example of this is the salary caps for many of the assistance programs. No charity wants to be caught giving money to someone earning six figures, even if the burden of therapy bills mean the family is effectively living below the poverty line. Make-A-Wish doesn't have a salary cap. No one wants to be mean enough to tell a parent whose child is dying that they should pay for their own Disney vacation. (And anyone who did should be studied as a cartoon supervillain.)
I could go on about whether or not it's worse to have to face years of watching your child suffer but know there will be an end or to watch your child suffer and know that this could be their entire life for the next eight decades. But that distinction is meaningless: they both suck and no one should have to face either one alone. But society is much more accepting of the first one. The second is seen as the family's burden to bear.
I'm grateful that my sons have a chance at living a full life and yet it also terrifies me to know that my burden on hands-on parenting is likely to last for the remainder of my life. The knowledge of that potential future is exhausting and saps the hope and energy needed to do the work today.
Hopefully as more people come to understand autism, there will be more compassion for the burden the families are facing.