Please Do Not Feed The Fears
I’ve been meaning to post this one for a while, but you know how life gets in the way of that “publish” button. So here it is… pushing “publish.”
We’ve come a long way, Baby. A long, long way. Supposedly, in 1975 only 1 in 5,000 children had Autism Spectrum Disorder. By 1985 that number had doubled to 1 in 2,500. No one noticed. No one really knew what Autism Spectrum Disorder was quite yet, unless you count Rain Man (1988?) with Dustin Hoffman’s character, who the movie claimed was an autistic savant. Oh, Rain Man. That movie is really a bane to ASD since the Rain Man‘s character was based on Kim Peek who had Megasavant Syndrome, Macrochephaly, and FG Syndrome but did NOT have Autism Spectrum Disorder. The movie tried to put a positive view on ASD and bring attention to the disorder, trying to help dispel the stigma of ASD and that part is good… but it also gave the impression that savantism is typical for autists and it’s just… well… not. Dustin Hoffman’s portrayal of autism was simply inaccurate, especially when taking into account that the character was based on a real man. Then when people who know very little about autism except what they think they’ve learned from the movie Rain Man find out that my Sweet Girl is autistic they’re surprised because she’s “not like Rain Man.” I can’t tell you how much restraint it takes to keep from growling and snarling,
“BUT THE REAL RAIN MAN WASN’T AUTISTIC! GOOGLE KIM PEEK!”
Ahem. Sorry, I do that sometimes. I didn’t mean to wander.
When my Sweet Girl was first diagnosed, the Autism Numbers were “1 in 166 children are on the Autism Spectrum.” That was 2004-ish. In 2007 the numbers appeared to shrink to 1/150 and people started to feel uneasy. In 2009 the numbers appeared to shrink again to 1/110 and panic was clearly settling in and vaccine denialism started to become a real epidemic. Then in 2012 the CDC released new numbers… 1/88 and people lost their fucking minds. Jenny McCarthy became someone to revere and even though the completely-discredited-by-multiple-actual-real-unaffiliated-with-pharma-scientists-who-also-proved-during-investigations-that-he-hoaxed-results-and-original-faked-study-and-article-in-The-Lancet-was-retracted Andrew Wakefield lost his license as a doctor and is not allowed to practice medicine, he’s still be touted as a reliable source regarding vaccinations and Autism Spectrum Disorder.
The CDC recently put out new numbers that one in 68 children are estimated to be on the Autism Spectrum. Every time this number changes, people panic. People want to find the CAUSE, the BLAME, the REASON for this TRAGIC EPIDEMIC!!!!!!!! Because of course we have to figure this out and PUT A STOP TO IT so that NO ONE ELSE HAS TO SUFFER!!!! We have to SAVE THE CHILDREN!!!! WE NEED A CURE!!!!! WE NEED TO FIGHT! AUTISM!
Right? I mean… think about this.
Can you tell me what’s going on that paragraph? What do those words imply? Can you figure out what’s wrong with the language in there that I see every single day from people who are suckered into vaccination denialism and Autism Speaks Rhetoric Disorder? The fatalistic language. Can you imagine being a child of a parent that’s using that language? There are many adults that have or had parents that used all of that fatalistic and negative language that make it sound as if Autism is a disease that needs to be stamped out, that Autism is damage and therefore YOU are damaged? Can you imagine growing up knowing that’s how your parents feel? It’s common language coming from the parental community. Who is suffering? The autistic children? The autistic adults? Who asked the autists if they were suffering? Oh wait… maybe it’s the parents who are suffering and shouldn’t be because they didn’t ask to be parents of autistic children. Why does there have to be someone to blame? What’s the tragedy? What needs to be cured when Autism isn’t a disease? Why are we “fighting” Autism? This isn’t a war and we aren’t fighting a thing… we would be fighting PEOPLE. Autism isn’t separate from our children or teens or adults. They ARE Autistic. Autism isn’t a label. It actually is a state of being, a state of the brain, a state of functioning that can’t be turned off.
All of that language is affirming only to parents who want to continue feeling victimized… but don’t realize that Autism hasn’t victimized them nor has it victimized their children. Autism Speaks did that to them.
We have to take a hard look at the Autism Speak induced language that is used. Even their very own informationals are anxiety-inducing. This is THEIR image… I didn’t futz around with this:
“The Cost Of Autism.” Every letter in that image is capitalized. They really want to get their point across in this Autism Speaks informational image that every single autistic individual is a costly endeavor not only for their poor, undeserving-of-being-afflicted-with-an-autistic-child parents, a monetary burden, but they’re costly and a burden to society. The COST OF AUTISM IS A COST TO SOCIETY! Cost = Burden. Hell they even put a dollar value on how much a burden our autistic children are. It can’t be much more obvious than that. It’s obvious with every single informational that Autism Speaks puts out. It’s obvious with what they do with their money and who they allow on their boards and who they allow to make their decisions about what “should” happen to autists. They are burdens that need to be lifted, and to do that we need to “research” to find out what caused the reason for them being a burden so that we can cure the reason. Except there isn’t a cure. It’s not a disease.
I have an image that clearly depicts some facts about Autism Speaks that are disconcerting, and I apologize for the size but any smaller and you won’t be able to read it.
Know The Facts About Autism Speaks: Please Don’t Donate
Something else started to happen over the past few years since the “OMG! EPIDEMIC” numbers came out. Backlash from adult autists. Because you know, Autism not being an ILLNESS or a SICKNESS can’t be an epidemic. That’s elementary. Autistic adults have been lifting their voices in different ways (thank you internet!). Autistic adults are writing books, articles, blogs, starting Facebook pages, doing research, contributing to society in a more public way than before. Sharing FACTS about what it’s like to be autistic. What it’s like to have the language that attempts to separate the ASD from the individual when in fact, trying to do that is dehumanizing. Advice for parents of autistic children. The best advice I ever heard in how to raise my daughter has been to read blogs and articles and books written by autists.
Do you know that I’ve seen online discussions between parents of autists, and adult autists who have told them straight out that the language they’re using, Autism Speaks induced language, makes them feel dehumanized and minimized and that it offends them and that it hurt them as children when they couldn’t express it, that those parents tell them “That’s not true because my child knows I love him/her. You are not my child. You’re wrong about the language. The language I’m using is correct and I’ll keep using it until my child is able to tell me which language he/she prefers.” They insist that Autism Speaks is wonderfully supportive and brings positive attention and awareness to Autism.
Except it doesn’t. The attention it brings is negative, and none of the information is from the autistic viewpoint. It fosters the initial stressful, anxious, mourning reaction that we parents feel when we hear the diagnosis that our child has ASD and related diagnoses. Those are instinctive feelings when we feel guilt and worry because we know that not only are we as parents in for a rocky road that we weren’t prepared for as parents, but our children aren’t in for as smooth of a path as we imagined before they were born or conceived. We mourn the loss of the life we imagined, the perfect life that wasn’t going to be perfect anyway, but instead of adjusting the same way other parents that have children with neurological and/or physical disorders and/or genetic disorders we get stuck in an emotional quagmire because when we look for support groups and resources just like every other disorder out there, we see Autism Speaks in our search results first. They’re highly rated and hey, TV networks promote them. Trusted magazines and specialists, doctors, local stores, national stores, national and worldwide companies promote them and donate to them. They even offer special products during Autism month so that a portion of those sales go specifically to Autism Speaks! As a parent just starting out trying to figure out the new normal, it can take a while to figure out that they’re really not legit. They’re really a parental support group, promoting the sorry-for-yourself parental support by endorsing the Autism Is A Tragedy That We Need To Cure And Prevent mode of thinking.
They don’t promote acceptance. Acceptance is what is needed, desperately. It’s needed for the sake of holding families together and for the sake of the parents’ sanity and for the sake of the autistic individual most of all. We don’t want any more generations of autists growing up thinking that they’re Less Than. As Temple Grandin wrote, Different Not Less. That means EQUAL. It doesn’t mean that ASD isn’t still a disorder. Someone that has Down’s Syndrome or Bipolar Disorder or Diabetes I or Dementia or Fibromyalgia or is Deaf is Different Not Less, they are EQUAL, while still maintaining that their diagnoses are very real and shouldn’t be minimized. Acceptance is key. And Autism Speaks is not accepting of Autism at all… because the implication of their rhetoric means that the research they’re supposedly doing and funding would be to eradicate Autism. Detect Autism before babies are born is one goal. Can you imagine the implications of that?
No one can live in that constant state of anxiety and fear. I’m not talking about we parents.
I don’t have a great segue into this next bit, so here we go.
What does this new number released from the CDC actually mean? What does 1/68 mean? This is a great blog that explains it but the main thing I want you to get out of this blog entry at the Thinking Person’s Guide to Autism is “Don’t panic… Tone it down.” So click on this here:
Thinking Person’s Guide to Autism: Keep Calm and Think Critically: The CDC’s 1 in 68 Autism Numbers.
There’s another problem. The CDC sucks donkey balls not only at obtaining accurate ASD numbers across the country (honestly the sampling referred to in the article is ridiculous) for children, but it’s nearly non-existent for adult autists. That means that it appears as if with the currents statistics that there’s an increase in ASD rates and that there are far more children with ASD right now in the U.S. than there are adults with ASD. The reason this is important is that if they did that, they would likely see that the rates of ASD have been stable and are equal between children and adults.
Want to see something really cool? I mean really, really cool. The UK did exactly that. When they say 700,000 people ie. 1/100 of the population they mean children and adults. This is a really Big Deal.
How many people in the UK have autism? Click here
Around 700,000 people may have autism, or more than 1 in 100 in the population.
There is no register or exact count kept. Any information about the possible number of people with autism in the community must be based on epidemiological surveys (ie studies of distinct and identifiable populations).
The latest prevalence studies of autism indicate that 1.1% of the population in the UK may have autism. This means that over 695,000 people in the UK may have autism, an estimate derived from the 1.1% prevalence rate applied to the 2011 UK census figures.
The prevalence rate is based on two relatively recent studies, one of children and the other of adults. The prevalence study of children, (Baird G. et al., 2006) looked at a population in the South Thames area. The study of adults was published in two parts, Brugha et al (2009), and The NHS Information Centre, Community and Mental Health Team, Brugha et al (2012). This is the only known prevalence study to have been done of an adult population.
(click on the link in the subject line of the article to see much more from the article)
I’m trying to bring all of these thoughts into one cohesive “Ah Ha” for anyone reading this. I know I’m not reading as being very linear today. Blame the Fibro Fog. All right. Here’s what all of this means to me in my heart:
My Sweet Girl is 9 1/2 years old now. Since she was diagnosed so many years ago in preschool, she has come a long way in so many areas and I’m so very proud of her. Early on I became uncomfortable with Autism Speaks and couldn’t put my finger on it. I prayed on it. I think I blogged about it. It was a huge turning point for me because that’s when it stopped being about me and more about her. I started to ignore Autism Speaks and their language, and I sought out blogs and support groups run by autists where I learned about their dislike of Autism Speaks and certain other groups. I continued my education about Autism and the related issues that my Sweet Girl has, and let her know that I don’t want her to change. I want to help her learn to cope and get an education so that she can learn how to get around in a world that wasn’t made with people like her in mind. We use positive language regarding ASD, and we don’t keep it a secret from her. She has a great IEP team at school, and she attends the meetings now. If she chooses not to attend, I bring a list with her concerns and wishes on them and her team takes it all seriously. They’ve actually made positive changes due to what she wants and it’s helped her.
Since making these wide sweeping changes in how I think, it’s changed how I advocate and treat her. She’s better able to self-advocate. She’s proud of her ASD and values it. This isn’t to say that there aren’t incredibly difficult, downright miserable days. moments, hours, but the positive have been outweighing the negative. We’ve both matured. Her sisters are her advocates. Her CLASSMATES are her advocates and while they know there’s something a little different about her, they don’t really know. Her teacher told me recently that all of the girls and most of the boys (this is the first year boys are involved, eek!) are very protective of her and they all adore her. They ALL notice if she’s not participating in social activities so they ALL encourage her and include her in everything. If her feelings get hurt they all do their best to explain situations to her, and if she hurts someone’s feelings they explain to her why their feelings were hurt. I’ve never seen that in 5th grade classrooms. Her teacher has never seen this. The children in this class are so genuine with her, I’ve seen it and it fills my heart.
The social stuff is still hard. That’s ok. The need for perfectionism is hard. That’s ok. The intense passion over certain subjects can be difficult. That’s ok. The meltdowns, the sensory processing issues, the eating issues, it’s all ok. We’re working with it. We’re teaching her and disciplining her, just in a slightly different (not less, but equal) way than other children. I’m learning different approaches and language that might be useful when disciplining her and even how to approach her during the escalation of a meltdown (not a tantrum) and teaching her how to identify when she’s about to have one. We’re teaching her that it’s ok to “not speak” or “not make eye contact.” We’ve taught all of our girls that they have the right to refrain from giving permission to having anyone touch them… whether it’s a kiss on the forehead or a gentle hug or a touch on the cheek… with thanks to sensory processing disorder. Who knew? We’ve been able to find alternatives to an immediate hello, an immediate welcome hug or kiss, with a finger wiggle that says ‘Hello.’ Because you know, Autism or not, you still should be polite when it’s possible. Reminders of manners still occur, but when she’s unable to say hello or be courteous to society standards or family standards I happily stand up for her without apology. I know that she’ll come back later to say hello on her own terms in her own way. Because I gave her that permission while still trying to teach her Society’s Way.
Since making these changes in how I think, my own stress about her ASD has reduced dramatically. Do I still feel anxiety occasionally? Yes. The biggest difference is that I don’t wish things were different for her or for me or our family. I ACCEPT her Autism completely, even in the midst of the worst of her meltdowns. As hard as those meltdowns are for me to get through with her; as scary as the meltdowns can be for her sisters; as disconcerting a they can be if they occur in public with people staring; I know that the meltdowns and the challenges and the difficulties are hardest for her to get through. Sweet Girl is the one experiencing the sensory explosions, the emotional upsets, the takeover of her brain and body. I see the panic that occurs when she realizes she can’t control it but wants to… and that’s the moment she accepts my help. I let her experience what she needs to experience before that. I let the fire burn what needs to burn before I enter that building. I pick my moment. I speak low, gently, and offer sensory input of her choice. I offer a different location that’s quiet and unoccupied and safe. I let her stim to her heart’s desire in her safe place if she needs it. This isn’t easy. I’m not always patient. I’m not always good at this. What gets me through enough to help is knowing that she’s not doing it on purpose, she’s not enjoying it, and those moments are the rare cost of the rest of her amazingness. I don’t use the word amazing very often. I don’t want it to lose meaning.
Since my own anxiety has reduced, so has hers. She’s been more independent and is more willing to try doing new things. I speak to her with respect and assume that she understands what I’m saying until she makes it clear that she doesn’t. I ask her if she understands or needs me to “say it a different way.” I respect her boundaries, although sometimes I forget. She has a lot of rules, you know. 😉 She knows I try. Instead of smothering her with hugs and kisses when I feel the urge, I tell her that I want to hug her and kiss her but won’t because I’m respecting her… and she smiles. Sometimes she’ll tilt her head toward me so I can kiss the top of her hair where she won’t feel the kiss. Sometimes she offers a spontaneous hug. Sometimes… rarely… if I say to her, “I love you, sweet girl,” she says, “I love you” back.
Sometimes she can go from being Miss Grumpyface who’s ready to move out and find a new family after a meltdown to sitting with me for a snuggle and asking me to help her create a recipe for a new idea she has.
Positivity. Positive advocacy. Allowing her to self-advocate. Being the parent she needs and wants. ACCEPTING and loving who she is. There’s no mourning over Autism in this house.
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There are several places I love to visit for support:
The Thinking Person’s Guide to Autism
Diary of a Mom
Autism Women’s Network
ThAutcast
I know I’m missing some, but those will get you started.
Ever So Gently 
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