Many of you may or may not know the Combating Autism Act (CAA) is up for re-authorization this September. The CAA was put into place to provide funding to ‘combat’ autism and while the language within the law suggests that it should include research into support services, the spending priorities of the law are identification and cure research. Because of this, many Autistic advocates, activists and family members are asking that Congress either reform CAA or let it expire all together. Our greatest concerns are voiced in the Autistic Self-Advocacy Network’s (ASAN) Memorandum on CAA Re-Authorization.
In a nutshell:
“(…)The law, which passed without the involvement of the self-advocacy movement, is a source of frustration for many autistic people and family members who are concerned by the law’s lack of investment in the needs of autistic adults, the overwhelming bias in favor of basic biomedical and causation-related research in federal autism research funding, the minimal opportunities for autistic people to provide meaningful input into CAA programs, and the offensive rhetoric in the law’s title.(…)” - ASAN Memorandum on CAA Re-Authorization
There are several concerns with CAA and three that really resonate with me. The first is the lack of funding with regards to improvements in services for Autistic people of all ages. The second and more specific are the needs of Autistic adults, which for the most part go unaddressed. And the third is that Autistic voices asking to be heard have been left out…
I’m not going to inundate you with facts and figures because they are provided in the various links in this post and because politics and public policy are not my strong suit. However, being Autistic and actually giving a damn is. With that, will someone please tell me what test we have to pass, what hoops we have to jump through and whose stamp of approval we have to have before we are considered capable of making decisions that directly affect us? Before we are given the respect we deserve and allowed to…
Speak for ourselves.
Why must we continually ask (and be denied) to be a part of the conversation about us? And why, in the minds of legislators and other ‘support’ organizations does the slogan of the Disability Rights Movement…
Nothing About Us Without Us
…continue to be ignored? We are continually spoken about as if we don’t understand what is being said about us, and even worse, that it doesn’t matter if we do.
Could there be a more offensive title? Please don’t answer that! Let me say this for the umpteenth time: Autism is not an illness or disease. Autism is a differing neurology, it is a part of us like a racial or gender identity. Many try to separate us from our neurology as if it is something we caught or something that can be ‘fixed.’ Rest assured it is not contagious and for those waiting for ‘the cure’ there is not one, short of us not existing. Personally, I am aligned with the many that do not consider us damaged or broken, and find us lovely just the way we are.
Do I take this personally? Yes. Very. This whole combating autism issue is directed at my kids, my friends – ALL Autistic people. Because I cannot be separated from my neurology, and autism is actually a part of me, to claim they are combating autism is to claim they are combating me.
StopCombatingMyKids. StopCombatingMyFriends. StopCombatingAutisticPeople!
IT’s TIME TO LISTEN
I fully support the idea that CAA either needs to be reformed or allowed to expire. The issues I mentioned of insufficient funding for services as well as lack of support for adults are of great concern for two reasons. First, it’s just wrong. Second, and of great importance to me is the future. Our future.
“ASAN is working to try and reform CAA to align its goals with those of the Autistic community. Federal autism legislation should follow the example of the Americans with Disabilities Act and the Developmental Disabilities Assistance and Bill of Rights Act. We deserve a bill that’s about supporting Autistic Americans, not combating us. Today, only 1.5% of NIH’s autism research funding goes towards the needs of adults and only 2.4% towards improving the quality of services. By re-allocating more funds to services and adults, we can help empower autistic people and our families.” – ASAN #StopCombatingMe
Like many of you, I have Autistic children who have not had adequate services and who, in a few short years will be adults. Will better services be made available? Will those supports be made available throughout their lifetime? And because of the continued lack of acknowledgement of Autistic voices, I have to ask: Will their concerns be heard if their needs are not met?
I don’t know.
I find it deeply disturbing that I can’t answer those very simple, straight-forward questions. There has been no indication that the concerns posed by actual Autistic people will be heard anytime soon.
AGAIN WITH THE LANGUAGE
It seems my last several posts have focused on words, language and how we speak to one another. How one word, such as combat, can be used to define an entire initiative. Combat doesn’t make me feel good, it scares the hell out of me. I Googled it and out of 94,300,000 hits, here is the first definition that popped up:
- 1.take action to reduce, destroy, or prevent (something undesirable).
I would like to say I’m speechless, but then my post would end on an ugly note. I never end a post on an ugly note. But it’s right there in front of our faces, the name of the law says it all:
Combating Autism Act
So here is the question we all need to be asking: Is action being taken “to reduce, destroy and prevent (something undesirable).” And if so, I’m devastated because we cannot destroy autism without destroying a people. The idea of combating autism says that we are unworthy. CAA has shown in the past it’s dedication to research into identification and cures. The very lack of funding to improve services and address adult concerns supports the idea that we are unworthy in their eyes. That we are lost causes easily forgotten.
LOST CAUSES, HOPELESSNESS AND WHY I WILL NOT BE SILENT
I always hated the sound of that: A lost cause. What a sad thing to think of. It means that at one time there was hope, but for whatever reason, it’s been given up on. The more I get into advocacy and activism the more I see that living, breathing human beings, in this case Autistic people, are considered lost causes. We’ve been given up on - we’re hopeless. If not, why wouldn’t our government do everything in its power to ensure the best services possible throughout our life span? Why would the majority of spending support research into causation, prevention and cures?
The day I accept the “Lost Cause” garbage will be the day I stop advocating for autism acceptance and disability rights. It will be the day I decide that however hard I try or loud I speak it’s a waste of time, because no one’s listening anyway. And it will be the day I decide that neither the Disability Rights Movement nor the Neurodiversity Movement matter…
i.e. Not gonna’ happen
There is only one lost cause here today and that is the idea that autism needs to be combated. It’s time to stop wasting time and other valuable resources that could go to supporting Autistic people. It’s time to…