My 15 year old son is severely impacted by his Autistic Disorder. It presents real challenges for his ability to function in every aspect of his life. He has an Autistic Disorder that manifests in his limited understanding of the world, in repetitive, obsessive behaviors, in self injurious behaviors to name only a few. He will have to live his life dependent on the care of others, every day for the rest of his life. My son has an Autistic DISORDER diagnosis. My son is a joy but his autism is not a joy. His autism is not a blessing.
Some parents of children with autism disorders delude themselves and tell the world that autism is a joy. In doing so they are misrepresenting the realities of their children's autism disorder. People do not seek medical attention for their children, their children do not receive DSM or ICD autism spectrum disorder diagnoses, because of the joys or blessings in their children's lives.
By all means parents, and high functioning persons with autism or Asperger's disorder diagnoses, write books, make public appearances, build a lucrative career as a parent of an autistic child or as an "autie" or an "aspie", blog and tweet away. But please do not tell the world that up is down, that in is out, or that autism disorders are not disorders.
Please do not misrepresent the realities of autism disorders.
It's not just parents with autistic kids that do this, of course, it's defensive parents of all manner of children, eager to show the world how strong their love is and how nurturing they are. No disorder, no problem, no defect isn't a blessing from above provided it is made manifest in their child, who they love and would never change.
ReplyDeleteThe "never change" thing is the true dodge, I think. I think that by saying they wish they could change their child's autism (or insert other issue) they are somehow betraying who their child is; that wanting change means being disappointed or dissatisfied.
I love my daughter no matter what, but I certainly don't consider her autism a gift.
Even after all these years, Harold, still not drinking that neurodiversity Kool-aid, are ya? ;)
ReplyDeleteNo, I will never swallow the Neurodiversity Kool Aid Claire. Unfortunately the mainstream media is usually eager to take a gulp.
ReplyDeleteAutism is hell, pure living hell on a minute by minute basis every single day. I love my girls, but their autism I absolutely hate with all my heart. It is literally killing my wife and I on a daily basis.I don't quite know how anyone with autistic kids could feel any different. They must have a super duper support system that I certainly don't have. The more I live with this disorder the more jaded I get when I hear the aspie auti dispute. I'm sorry but to me they occupy two distinctly different realms. My kids don't speak or feed themselves at 2 and 4 years old. We work and work and the autism comes in waves of unpredictability and harshness. My wife worked before we had kids and she will never be able to return. What does the government offer. SQUAT! Sorry to rant but it's been a bad week.(Not a joy or blessing to be sure).Thanks for the Forum Harold. Cam.
ReplyDeleteThis is long but I really want to share. It's an excerpt from my moms first book (her second and much more acclaimed is MIRACLES ARE MADE: A Real Life Guide to Autism, however she wrote the first book while still raising all eight of us crazy kids--four on the spectrum of autism-- and the hardships are still raw) If this is too long, I apologize. I so agree that too often the realities and extreme difficulties are downplayed, to everyone's detriment!
ReplyDeleteExcerpt from Jeff: a sexually realized spiritual odyssey of stepping into love
By Lynette Louise
Pg 31
My poor babies had been rejected so often by so many people. First, their natural parents, then their foster parents, then my husband, my family, their teachers and eventually my friends,
And finally you.
Pg 32
So, there we were, driving home from the cottage,
When my phone rang,
A little ring.
The mom in me was in trouble,
Again.
Rye had been kicked out of camp and apprehended by Children’s Aid,
Again.
You can get used to anything, so my panic was minimal.
‘Why?’ I asked.
Apparently Rye had been running and screaming and VVRROOMING at the top of his lungs all night long. On the second night the exhausted camp counselors gathered Rye’s brothers together and asked for advice. They had been trying to reach me but none of the numbers I had left were of any use to them. So they turned to my other children for help.
“Does he do this often?”
“Lots and lots.”
“What does your mommy do when he acts like this?”
“Tie him up.”
I was in trouble.
Again.
Poor Rye, he was just too wound –up to stop moving, even for sleep. Dar was the same. Something about autism and sleep doesn’t mix. However, Rye was close enough to normal to get me in a lot more trouble than Dar.
Because Rye was close enough to normal to be irritating.
And because Rye was dangerous.
Because he was fixated on so many hazardous things like heaters and furnaces and tailpipes and hanging out of second story windows. And of course there was that destructive savant in mechanics that led him to want to take everything apart but never put it back together again.
He was my challenging little “Houdini from Hell” whom no lock could keep in, or out, or even slow down.
Sleep deprivation, destructiveness, fixations and an inability to restrain themselves are common complaints with autistic kids. People who deal in children’s services should know all about it. But they seldom do. So people like me, with children like them, get in trouble.
Of course I’d known this would happen, had seen it coming. That is why I had had the doctor prescribe a bed harness to keep Rye safe and make him stop sneaking out in the night and going into other people’s houses looking for heaters.
He was only four years old. He needed to be contained somehow.
I knew how to prevent Rye from getting out at night but I also knew that whatever method I used needed to be approved of by a recognized professional. Otherwise I’d be called abusive and my son would be considered at risk. How ironic!
Because my son was at risk I had to keep him safe, which put my son at risk of my keeping him safe, which put me at risk, of getting in trouble for preventing him, from running the risk, of coming to harm.
So I had gone to the extra trouble to involve the doctor and make my parenting legal. The contraption he sold me was pathetically ineffective. However, it was medically prescribed, which made it superior to anything I could come up with in its ability to keep me out of jail.
So I bought the harness for my protection from accusations, and created my own device for Rye’s safety from fires and falls. This type of social politicking wore me out even more than my kids did.
I felt that I should have been able to be honest and just do what was best for my son without fear of persecution.
But the undesirable world of “Woe Is Me” is papered in. “Should Be Able To’s” so I just dealt with it by accepting the fact that such was not the life for the single Canadian mom of four special-needs sons.
@Jim W It is so easy to deny one would accept a change in their condition given that it is currently unavailable thus impossible. Much like the person who tells you they would never change their appearance even if offered $1,000,000, I do not believe it for a second. I hope to see them all eat their words should a remedy ever become available.
ReplyDeleteLet's Keep Hoping & Praying A Cure is found for Autism.