Monday, July 22nd, 2019
now browsing by day
Yesterday I noticed someone (who I barely know) had posted that for his birthday donations to Autism Speaks would be kindly accepted. I privately messaged him and shared the following:
For almost 8 + years, my son and I supported Autism Speaks locally as well as at various walks, not local. We did so on our time and our dime, however, the more we helped them, the less we were acknowledged. We were not looking for a pat on the back, but we wanted to be heard because as the phrase goes, “Autism Speaks in Listening,” however they aren’t. They are just another 501c3 that pushes their volunteers to go out and raise money for the organization. The funds, in theory, are being assessed for research but how much of that money is going into salaries, and other upfront costs. The majority of families soliciting funds are scrapping by taking care of their children. Very little money donated to Autism Speaks goes toward helping individuals on the spectrum and families. “Only 1.6% of Autism Speaks’ budget goes towards the “Family Service” grants that are the organization’s means of funding services.”
When Autism Speaks about the spectrum, they dramatize the lowest end of the lineage, and they are ignoring those that may need it the most, the high functioning. And their counterparts may teeter-totter on the line. Out of 26 members on the board of Autism Speaks, only two are identified on the spectrum., and one may not have any connection to the malady known as Autism!
My son Alex pointed out to the local board that it was time to stand up to this organization and stop portraying individuals that have Autism as mysterious and frightening people. He was speaking for all and suggesting it is time to be aware of the realism that is associated with the Spectrum Disorder. It is also time to understand the mixed-bag of diagnosis labels given to children who grow up to be adults. If we assume Autism is mysterious, and we are frightened by their unique qualities, consider how they may be looking at the rest of the world. Who says we are normal and they are not?
My son Alex was once told he would not amount to anything by a local psychiatrist here in the Cleveland, Ohio area. Well, Alex proved her wrong, and he wants to help others escape the labels and preconceived notions. Alex has a dream (2 dreams). The first is to follow his heart and passion for baseball and grow within the MLB system. He will never be a major league player, but he wants to develop within the framework of this remarkable group of people. Also, he is determined to show you and the rest of this bigoted society that he and others weird. They may have symptoms of the disorder; therefore, they have unique abilities to function if we provide the pathway.
We must stop separating them and their families, leaving our communities disjointed. The value of their voices through art, music, sports, science, technology, and various contributions they can offer is invaluable. Autism Speaks must learn to speak their language and listen to their needs and wants. Do not assume that if you have a child on the spectrum, they will only have friends or acquaintances just like them. It is time to stop pairing one Aussie with another.
Alex is not in this fight alone. Here in Cleveland, Ohio, the brave and vocal John Keaney walks around this city with a sign that states his name and proudly displays he has Autism. Note, he has Autism, but Autism does not have him. John is able and capable of living on his own, driving, working as well as cultivating friends despite what some doctors and or scientist may have told his family. The word is out to stop the ignorance.
Creating a dating site for those on the spectrum is wrong! Get to know someone with Autism and learn how easy it is to love them. I fell in love with my husband 35+ years ago. I did not know what Autism was and neither did he, however as his mother said on numerous occasions, Rich marches to the beat of a different drummer. Although I agree, I learned to march with him, and last week we celebrated our 35th Wedding Anniversary. I am in love with my husband, who has Autism and functions like the typical population. Alex is living life as a regular individual. Isn’t it time we tell Autism Speaks to stop the chatter and listen?