Monday, August 12, 2019
A letter to William Shatner from the Autistic Community
You seem to have a very misguided view on the #actuallyautistic Community. I will attempt to explain your inconsistencies in a way you can understand.
You say 85 cents for every dollar goes to advocacy at Autism Speaks.
Actually yes. Kind of. They group family services with research, advocacy and awareness. There is no true way to know how much exactly they spend on family services. Would love to know these numbers.
You say Autism Speaks no longer wants to find a cure.
No, Mr. Shatner. Why then are they spending so much in research and not putting that money into helping Autistics and their families?
You say there are several people that identify as autistic on the board.
It is a step in the right direction but these autistics do not represent what the community wants. Self diagnosis is 100% valid.
You say "If you do not like being called out or blocked, don't start. If you do & you get called out or blocked you only have yourself to blame. Several take it to martyrdom. If you want to respectfully debate or inform, I am here. Do we understand each other?"
No, Mr Shatner. What you call martyrdom is autistics speaking out. We get to self advocate without your permission. You call us being disrespectful but you sir are tone policing. We are a marginalized group of people and we will not be tone policed. You silence us when we are trying to self advocate.
You say,". . . a sin of the past. Yes AS doesn't have a good track record in its past but it HAS listened and changed. If you still don't like them because of some of these issues; that's perfectly fine. However attacking others because they do; is wrong. That's what goes on each year."
No, Mr. Shatner. If someone has wronged you, and they say they will change, does not mean they will. We are not so quick to trust. Just like if your girlfriend cheated on you, you would not be so quick to trust them again. Autism Speaks does not listen. The hold countless polls of Identity First Langauge vs Person First Language. They delete it when they do not get the result they want. They still spend money on research. Research trying to find a cure when they cannot find it. Autistics speaking out is not attacking. We are making ourselves heard. Attacking is silencing autistics which you made a hobby of.
You say, "If research can find ways of improving the the quality of life for for those lower on the spectrum then I'm all for that. The issue I see is that the paranoia and mistruths about AS get perpetuated and facts that may have been true in 2005 with videos shaming autistics are . . ."
No, Mr. Shatner. Research means finding a cure. Nothing more, nothing less. That was the aim of the organization from its conception. "Lower on the spectrum" that is not how a spectrum works. A spectrum is not linear. Everyone who is autistic has struggles and strengths from all over the spectrum. No two autistics are the same. There is no "high functioning" or "low functioning." We are just autistic. Do you know what would improve our quality of life? Acceptance and appropriate support. Not wasting money on pointless research.
You say, " What I don' hear about these #actuallyautistic that are on the lower end of the spectrum. The higher end wants donation monies to flow to them to improve their current lives and to stop research and studies. How is that fair to those who need constant care?"
No, Mr. Shatner. Again, you misunderstand that a spectrum is not linear. There is no "lower end' or "higher end" of the spectrum. It does not make sense. What we want is for all autistics to be supported. All support needs. Not just those who need minimal support or those who need constant support. EVERYONE. Paying for the research takes away from that. How is that fair for those needing support when you are paying a lab with money that could be used to help people?
When autistics talk, you need to listen to us. ALL OF US.