Saturday, January 19, 2013

Facing Autism Parenting Challenges? Try A Bit of Janis




As a father of a soon to be 17 year old son with severe autism disorder symptoms and profound developmental delays I understand fully when parents discuss those challenges on line.  (He is also a very solid 6'1" and still growing). I do not mock other parents and accuse them of engaging in self pity, or of demonizing their children,  as do many in the Neurodiversity movement including the "Thinking Persons" at the TPGA.  

I understand fully what it means to try and help your adolescent son when he is hitting himself in the head in the middle of the night or when at a younger age he slipped out of the house unnoticed, crossing full parking lots and a busy main street on a busy Saturday afternoon.  I understand and I communicate these challenges so that people in the world at large are not misled by the media that adores the high functioning success stories or the DSM5 teams that are now redefining the most severe intellectually disabled autistics out of the spectrum as the only co-morbid condition group specifically and expressly targeted for exclusion.

I communicate these realities to be honest to my son and present honestly the challenges he faces even as those with his symptoms are being abandoned by the inglorious drafters of the DSM5 autism spectrum disorder.  To those who think otherwise I hope  you have a good day.  

When I feel the stresses of caring for a severely autistic, profoundly developmentally delayed son, as happens on occasion, I do not seek support on the internet.  I find my joy in my son, not in his disorder but in him, the pure joy in the many good times and even the joy that comes from trying to help some one as best you can overcome the severe challenges they face.  

I also, like any human being, find joy in diversions, including music.  Some musicians have the ability to lift any spirit, to assist in facing any challenge.  One that I have always enjoyed since the days when she was with us and blessing us with her talent and her incredible heart and soul was ... and still is ... in her music ... Janis Joplin.  If you're feeling a bit worn down try a bit of Janis.  I don't know for sure if it will work for you but it sure works for me. 

6 comments:

Maxwell van Simionato said...

but the question is why? Why do the "Neurodivergents" glorify autism as some sort of 'different way of being' or advertise only success stories? I still don't understand. :(

A said...

Today is Janis Joplin's 70th birthday!

Autism Reality NB said...

Thanks for the info A. I wasn't aware of that when I posted today.

Roger Kulp said...

No the intellectualy disabled are not the only group left out.Neurodiversity and the APA,they are pretty much the same thing,ignore those with autism,plus mitochondrial disease,Dravet Syndrome,cerebral palsy,cerebral folate deficiency.and a bunch of other diseases.

You say you don't seek support on the internet.If it weren't for the internet,I would never have learned about cerebral folate deficiency,and if it weren't for the ARI and other internet support groups I belong to,I would never have found the doctors I have,or gotten a diagnosis of it.Just saying...

To sort of answer Maxwell's question,those with Asperger's are unable to understand others who are not like them,or have any empathy for them.It's part of what makes Asperger's Asperger's.They think everybody is just like them.There are so many of them,that they shape everythting that is said and done about autism.Neurodiversity is a creation of the APA.I am really glad now,that I have another diagnosis besides autism,so I don't have to be identified with a lying bunch of creeps and a**holes like that.

farmwifetwo said...

I read TPGTA's reply this morning. There is nothing in the Slate.com article that hasn't been said a million times in the 7+yrs I've been online in autism-land and been swatted for saying. They are one of a number of reason's my blog vanished and the number one reason I lost respect for them long ago.

They think by demanding silence it will happen. It doesn't. The online world isn't the be all and end all. I have discovered that acceptance begins at home and that most people and professionals don't read nor care about the online "autism is wonderful" world since they know it can be anything but.

Mine got nearly a km up the road this past summer. The neighbors saw him. He ran home - wouldn't go with them - while they drove home to tell us where he was. We were 100% certain at the time he was upstairs. He's a sneak. If he doesn't want you to hear him, you won't. We think he was headed for the playground since I'd told him he had to wait until 1pm and it was just after 12. He tells time well both digital and analogue. Which is why he's been registered with the OPP.

Roger Kulp said...

Amy Lutz's article is one everybody should read.Harold,she gives you a plug.No blog that I have seen has mentioned it.