Editor's Note: While this article refers to a child with Asperger's and her mom, its insights, reflections, and wisdom may also apply to all of us, in one way or another. See the end of the article for definitions of ASD, autism, Asperger's Syndrome.
So we had a diagnosis. With the diagnosis came a label. I hoped that naming Grace’s idiosyncrasy — awarding her the title of a person with Asperger’s syndrome — would present us with some allies, open some doors. Instead, it became evident pretty quickly that we were on our own.
I decided to look for some positive role models for Grace.
Searching the Internet for famous people with Asperger’s felt like an extraordinarily libelous act: countless sites exist attributing autistic or AS diagnoses to household names without, as far as I can see, any proof or confirmation from the subjects themselves.
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So I went back to Amazon to seek a book for children about autism heroes. I found one that celebrated Albert Einstein, Hans Christian Andersen, and Wassily Kandinsky: the world’s most famous scientist; the world’s most famous storyteller; and one of the first abstract artists (and creator of singularly beautiful works).
Telling Grace that she shared attributes with all of them was a moment of pure joy. Watching her leaf through the pages and see that her brain worked the same way as the writer of The Little Mermaid almost moved me to tears — it was as though she had discovered a long-lost relative and the missing piece of the jigsaw and the pot of gold at the end of the rainbow, all at the same time. It should be in every school library.
Moving Forward with Different Minds
The idea that Grace belonged to a group of “different minds” stayed with me. For a long time, I turned over in my head thoughts of famous artists and writers and actors who had seemed to exist at a different altitude, their senses keener and their experiences both sharper or more colorful and, often, more painful.
Then I saw an article in the New Scientist that asked, “Could mental illness have been the making of our species?”
Many conditions, including schizophrenia and bipolar disorder, as well as developmental conditions like autism, are at least in part inherited from our parents. If they affect people’s chance of survival adversely, you would expect natural selection to have eliminated them, but instead they persist at high levels.
The story moved me enormously, and cheered me. Its affirmation of different minds, and man’s ability to adapt and move forward as a species by embracing them, felt like an affirmation of my daughter. I felt as though the author, Kate Ravilious, was beckoning me on to show me Grace’s antecedents, to set out for me her alternative personal history and her role.
The article examined the persistence of genes associated with different kinds of brain development and explored the part they might have played in enabling our race to flourish. From technological revolutions that started with spears, to bursts of artistic creativity that began with early carved figures and simple musical instruments, to unusual and creative people like shamans, the article charted the special talents in the population that have helped humans to get this far.
If instead of ostracizing people with maverick minds, we could only learn to cherish them, as Ravilious suggested:
If the special talents in the population have helped humans to get this far, we may need such different modes of thinking to see us through the next few thousand years. If the past teaches us anything, it’s that humanity thrives by being adaptable.
The Flip Side of Disability: Ability, Talent, and Attention to Detail
Professor Simon Baron-Cohen is director of the Autism Research Centre at the University of Cambridge. It is pretty much impossible to avoid coming across his name in any exploration of autism and related conditions. Way back in 2009, he was already warning — according to a BBC News article — that the prospect of a prenatal test for autism that would allow couples to choose whether to have a baby with the condition might also mean the loss of particular talents in the population.
I pursued Professor Baron-Cohen — via polite phone calls and emails to his charming assistant — to ask him about this directly. He emailed me back, and to my question — did he consider Asperger’s syndrome to be a disability — he responded: it’s a mixture. The disability, he said, lies in social and communication domains, where the individual may experience high levels of social anxiety and difficulties in communication, and may find it hard to read social cues and imagine other people’s points of view. He called it “mindblindness.”
So far, so familiar. Then he said,
“But the flip side of AS are areas of ability and sometimes even talent. These tend to be in two key areas: attention to detail (where they may notice details other miss) and seeing patterns (particularly regularities that enable them to figure out ‘how things work’). For some people with AS it might be math, for others physics or computer science, for others it might be the natural world. For some, their fascination with a class of object may not turn into anything particularly useful for them or for society, but...allows for the potential to do something remarkable (like run a successful niche business or make a scientific discovery or play music or create art to an extreme level).”
“I think we have seen a gradual growth in awareness of autism and AS over the decades, which is good. I hope we reach a point where such labels are accepted as easily as, for example, the label dyslexia, where there is no stigma attached to it and it is simply accepted that this person has a particular profile of strengths and difficulties”
My heart lifted upon reading these words. I so much want to hope that he is right.
A Light at the End of the Tunnel of Asperger's
In the meantime, however, something extraordinary happened.
I logged on to my computer one day to find that a reader, identifying herself as a person with Asperger’s syndrome, had written a letter to Grace on my blog. Debi Brown wrote what amounts to an Ode to the Joy of Asperger’s. Her tenderness for Grace moved me to tears.
Debi’s portrayal of life with AS and the loving assurances she sent to Grace about her own gifts are life-affirming. It is, in my opinion, the kindest gift any parent of a child with AS could receive. I have read it countless times and I am still incapable of reading the first and last lines without getting a lump in my throat. With Debi’s generous agreement, I’ve reproduced her letter in full at the back of the book. Here is my edited version:
The Point of You:
Grace, sweetheart, listen because I think I know what the point of you is. One percent of the population are spectrum folk. That means that you probably don’t know all that many yet, but there are a lot. There are 62,300,000 people in the UK. So that means 623,000 are on the spectrum. Most of these people have not yet discovered their Aspieness. The likes of you and me don’t tend to be known about at all. This causes some problems. For example, everyone tends to overreact when they get a diagnosis and imagine that things are far worse than they actually are. Also, now, when I tell people I’m an Aspie, if they know anything about the spectrum, they tend to assume that I cannot do stuff. The point is, that no one has quite understood the likes of you and me yet. The professionals get some bits right, but other bits, they can get really wrong.
It’s really important that you keep believing in yourself and how incredibly capable you are. Don’t let anyone tell you that you cannot do anything because of being an Aspie. It’s not true. Some super-wonderful things about you are: you are very, very bright. This means that you will be able to think your way around problems that others might think would be impossible for you. You will be a great communicator. Because you are so very, very clever, you will be able to find ways around the things that are extra-difficult for you.
You are able to trust — you trust your mum enough to tell her what’s happening in your life. That is so fantastic, sweetheart. This is such a good strategy for life.
You are able to love. I’m only just learning this bit now, so you are years and years ahead of me emotionally already. You are creative — you dance, sing, act, and dress up. You’re funny. This is a very attractive quality and will win you friends.
You are so, so brave. You don’t give up. This is incredibly important.
You tell the truth. This is a lovely quality and people value you for this.
You give great hugs and kisses. I’m only just learning how to do this. Again, you are years ahead of me. And other people will love you for it, your whole life long.
You are not limited in your choices to what the world sees as “normal.” This is a really valuable trait to have. It gives you a lot of wiggle room to choose what is right for you.
I’ve now met a lot of Aspies. Some of them have a lot of difficulty controlling their anger. But I don’t think I actually have met any Aspie who is mean. We simply aren’t mean people. We are some of the nicest people on earth. There are plenty of good things about being an Aspie, and this is one of them. Lots of nonspectrum people try to manipulate others for their personal gain. Aspies don’t do this. It’s not in our nature.
Precious one, you are simply fantastic and you have a wonderful future ahead of you. You are more capable and more lovely than you can possibly know.
According to Google and Wikipedia, ASD means Autism Spectrum Disorder and encompasses the wide range of associated psychological conditions characterized by abnormalities of social interactions and communication, as well as restricted interests and repetitive behavior.
Autism: noun -- a mental condition, present from early childhood, characterized by great difficulty in communicating and forming relationships with other people and in using language and abstract concepts. (Oxford English Dictionary)
Asperger’s syndrome: noun -- a rare and relatively mild autistic disorder characterised by awkwardness in social interaction, pedantry in speech and preoccupation with very narrow interests. (Oxford English Dictionary)
Reprinted with permission of the publisher, New World Library,
Novato, CA 94949. www.newworldlibrary.com.
©2013 by Sophie Walker. All Rights Reserved.
This article is adapted with permission from the book:
Grace, Under Pressure: A Girl with Asperger's and Her Marathon Mom
by Sophie Walker.
By the time her daughter Grace was diagnosed with Asperger’s syndrome, Sophie Walker’s life had unraveled. Her career was in disarray. She couldn’t sleep. She felt hopeless and useless in her role as a mother. Sophie began to seek the things Grace needed — everything from advocacy for her educational rights and protection from bullying to help with homework and making friends. In this book, she documents her and her daughter’s trials and triumphs, offering real-world inspiration.
About the Author
Sophie Walker has worked as a journalist for Reuters news agency since 1997, reporting news around the globe. She has written about oil, trade, and politics in Washington, DC, and has been foreign correspondent in the UK. Sophie is also an ambassador for the National Autistic Society and runs support groups for girls with Aspergers in her borough. She works closely with Ambitious about Autism, the national charity for children and young people with autism, and is also a patron of TreeHouse School for children who have a diagnosis of autism. Visit Sophie's website at www.AuthorSophieWalker.com/