Wednesday, April 17, 2013

Mother Of An Autistic Son Asks Autism Speaks for Some Actual Autism Awareness




The following commentary  is from the blog Muslimah Next Door  written by Dishad Ali. It addresses an issue that I have raised several times - the lack of real autism awareness created by autism awareness events. The author's comments at Muslimah Next Door under the title When an Autism Awareness Event is Anything But are followed by a letter from  Harshita Mahajan the mother of a teenage autistic son addressed to Autism Speaks.  I sincerely hope that Autism Speaks takes the mother's concerns, and the contents of her letter, seriously and begins to provide during autism awareness events awareness of the realities of autism disorders including some of the challenges presented by autism mild and severe. 
"We’ve hit the middle of April, and while there was a flurry of focus on autism at the start of the month, it still is very much “Autism Awareness Month.” Awareness events sponsored by local and national organizations continue to occur across the United States, but sometimes I wonder how much real “awareness” is actually happening? How many of these events just serve as fundraisers for the organizations sponsoring it?
Fundraising is not bad, and of course autism organizations must capitalize on the attention garnered in this month. But, if you’re going to frame event as “autism awareness,” then there be some education happening to make people “aware” of what autism is, what it entails, how it can be manifested. (Unless it is a closed event just for the autism community) There better be autism ambassadors at these events making sure things go as smooth as possible for those with autism (and without) who attend said events.
My friend Harshita Mahajan took her autistic teenage son Sahil to an autism awareness event recently sponsored by Autism Speaks, at which her son had a lapse of self-control. What happened after that was upsetting and resulted with Harshita leaving with her son. For this to happen at an autism awareness event – well the irony is not lost on me. Read her story. Share it. Let’s make sure events advertised as being about ”autism awareness” educate people, not just fundraise."
I encourage anyone interested in autism disorders to read the letter by Harshita Mahajan as posted on the Muslimah Next Door blog under the commentary When an Autism Awareness Event is Anything But.

3 comments:

Anonymous said...

I'd really, really like to read this... but the link isn't working, and "google" links aren't working either. Any thoughts on how to access?

Roger Kulp said...

The link works fine.

I don't know if there is a way to make a situation like this go off well.Fixating on objects that I wanted like this is how I have gotten arrested for shoplifting and hit by cars in past.There are a lot of things going on in the brain to cause these episodes.Sensory overload decreased cognitive function,and inability to see people and things around you are what I have going on.I have come back from autism,that is about as severe as Sahil here.I know I could be very helpful in educating people,but I can't do this on my own.I have asked both the New Mexico Autism`Society,and ARI if they might be interested in finding me something to do.They never got back to me,and I could tell it was very awkward and they were not that interested.

More tecently,I have been out in public,when my leucovorin was wearing off,and found myself slipping into behaviors like this.So it's something that has been treated but not cured.

Kim Oakley said...

http://www.utsandiego.com/news/2013/apr/22/nurse-abuse-autistic-man/

http://fox5sandiego.com/2013/04/22/nurse-convicted-of-abusing-autistic-man/#axzz2RG779Qlt