Fear. I have grappled with fear my entire life. I’m 54 years old. You’d think I’d have figured out a magic formula to ward off fear by now… but I have not. However I have figured out some things that used to frighten me, but that no longer do. Things like this:
“Among all autistics, 75 percent are expected to score in the mentally retarded range on standard intelligence tests — that’s an IQ of 70 or less.” ~ Wired Magazine 2008
“Roughly 25 percent of people with autism speak few or no words.” ~ SFARI 2013
These two quotes had not yet been written when my daughter was diagnosed, instead there were countless other “statistics” spoken and/or written as though fact, that terrified me. I had not yet learned to question everything we were told about autism. I had not yet realized that almost everything people said to us about autism and our daughter would turn out to be untrue. I had not yet understood that it was these types of things that caused me fear, not my daughter.
Often someone reaches out to me and they are filled with the same fear I once felt. They remind me of all those predictions, the “statistics,” the warnings, all the things people said to us that caused me to stay up at night. Terrified because the way autism was spoken of was filled with dire predictions, awful statistics, and because I did not yet know what autism would mean for my daughter.
It is one thing to read statistics that make you feel terrified and another to live with a person these statistics claim to represent. A lived life, a human life, a living, breathing, feeling, human being who also has fears and thoughts and desires. So many parents need help figuring all of this out so they can help their children flourish. Parents who hear and read all the terrible things people say about autism and Autistic people and then are faced with their child and find all those things being said distance them from the genetically closest human being they will ever experience in this life. (This was something Emma wrote to her brother not so long ago – “the one closest genetic person to you.”)
Statistics do not help us parent better.
One of the single most important things Richard and I began doing was to talk to Emma as though she understood, even when we were not sure she did, even when she walked away, even when she seemed uninterested, had her back to us, closed her eyes, said words that seemed completely unrelated, wandered off to some other part of the room, even then, we kept talking to her, including her in whatever conversation was going on. And now. Now we are so glad we began doing that, because, as it turns out, we were right, she understood it all.
She understood it all.
August, 2014
Emma's Hope Book 
Hey, maybe we should all get tee shirts that say “WARNING: AUTISTIC INSIDE”
:))))))
While on our vacation we saw a truck with a warning sign that said, “Warning! Stay back 200 ft. Not responsible for road objects.” We all thought that hilarious and began making up new warning signs that we felt should be on a t-shirt.
“Warning! Not responsible for your fears”
I feel this…
((Ariane))
yes…
(((Leah)))
I read, I think it was Napoleon Hill, who never accepted that his son couldn’t hear, and treated him as though he could (not in a denial kind of way, but more, I think, in the same way you spoke to Emma as though she could understand) anyway, long story short, his son confounded all the experts. As children so often do, if they are allowed to exist without their ‘limitations’ pulling them down at every turn. I get so cross when I read articles talking about Autistics (and STILL those with Down’s) as though they were subhuman – oddities to be eradicated or cured. So much for diversity. I am always so grateful for your blog posts – this kind of raw honesty is what the world needs to hear, and maybe, just maybe, more people will see beyond the statistics (‘there are lies, damned lies and statistics’) and parents won’t feel so mch fear. Thank you, again.
Meanwhile, Emma treated you like you could understand, even when the fearmongers had you temporarily but painfully tied up in heartbreaking knots. Because all of the Zurcher Longs are awesome knowers whose loving instinct will forever
buck the system of feckery.
I think parents need to hear more stuff about hope and less fear stuff. Like how do they know these IQ tests are accurate? Some people have trouble with reading, or math or spacial skills and such. It doesn’t mean they lack intelligent. We must change how people think about autism and how it’s treated. The attitudes must change and eyes must be open!
❤
People act shocked when I get upset because they treat my family like some great tragedy has been put upon us. They act like they feel sorry for us because we are all happy and we must be in great denial. I am trying my hardest to educate people I come in contact with, with patience and kindness. It is hard! Thanks to you, Emma and all the other blogs I read for first helping me to understand that things I was told were false. And secondly for helping me to have the courage to stand up and say NO! we do not need nor want what you are offering that is not beneficial to my family. It is amazing what greatness comes from presuming competence in my son. Now if I can just get the rest of the world on board with this idea. Thanks for all you all do. I cannot express how much different our lives are in the last year because of your blog and all the resources I’ve found because of it. It’s a good place to be. 🙂
My son was diagnosed in the bad old days (1970s) you can imagine the burdens foisted on us including bad mothering! I argued with all of them knew my son loved us and knew that he was loved we did not hear his voice until he was almost 18 and started typing. His statement “My mother nurtured a voice she did not know existed” filled my heart with gladness. Although I know the mistakes I made. How many doctors told me I was nurturing false hope as if such a thing exists I told them the day I lost hope I would die. It does my good to hear from this generation of mothers with such a positive attitude good to know it is a different world now although there are still too many parents in the grip of fear.
Reblogged this on Exceptional Delaware and commented:
As special needs parents, we are told things all the time. But nobody knows our children better than we do. We can get guidance and support, but at the end of the day, we know best for what makes our children who and what they are.
to break through what is untrue, it is necessary to stop learning and think. az, may em someday say the same about us both, “she understood it all”. working to that end one fear at a time with u b
Our son was diagnosed in 2000. I read book after book, article upon article, talked to pediatricians and psychiatrists and neurologists and behaviorists ad nauseum. I heard everything we were doing “wrong” from I don’t know how many professionals. By 2001 we had chucked the whole thing. I didn’t even donate my books to a library; I threw them in the recycling bin. I didn’t want another desperate parent picking them up and believing all the horrors described. Our son is 16 now, taking college level courses in space science and foreign policy. We have tried to teach him that he is different, but not disabled, no matter what other people’s preconceptions might be. Bless you and Emma both for speaking out about this. For all the attention being given to autism now, you’d think someone would be asking the real experts – the kids and adults with autism and their parents.
Thanks so much for your comment Gwenylis. So good to hear about your son, just terrific!
It’s extremely important to note that their means of determining IQ are completely incompatible with the way some autistic OS’s work. I read Ido Kedar’s book recently, in which he describes how when he was growing up everyone around him had been told he was mentally retarded. As you know, Ido is an extremely bright young man — but he finds it difficult to give the responses neurotypical folks take as signs of intelligence. I don’t know how much of a right I have to apply my own experiences here, since I’m verbal and have performed well on IQ tests in the past, but I know that sometimes when I’m put under pressure to think of something or figure something out . . . it’s like a wall will come up in my mind and my thoughts won’t be able to come anywhere near the task at hand. It’ll just get worse the harder I try, to the point where I can’t even process what’s being asked of me. It has nothing to do with my knowledge or problem-solving abilities; it’s just a really inconvenient brain quirk.
And, of course, the statistics about abilities aren’t representative of what people are actually capable of. You know firsthand how awful most of the approaches to teaching autistic children are. We can’t know what nonverbal autistics as a whole can do until we drop the pathological model.
What a wonderful post.
Apply the lesson liberally: question authority.