Susan's Blog

Sunday, March 14, 2010

Don’t De-geekify the Geek

Last Thursday I went to a conference in Rhode Island held by Community Autism Resources, an advocacy and support organization connected to Dr. Barry Prizant, one of the creators of the SCERTS model of autism education. Temple Grandin was the first speaker. I had heard Temple speak years ago, but having just seen the Clare Danes movie, I was eager to hear her again.

Temple talked a lot about different types/manifestations of autism and how to tackle the various issues associated with them. She spoke in terms of “brain problems,” rather than attempting to use traditional diagnostic terms like dyslexia, ADHD, or even autism. Her point was to make clear the fact that understanding the specific learning style of each brain you meet helps you relate to and educate that particular brain. You can’t get “locked into labels,” she said.

Temple discussed comprehension and learning styles by making three basic categories: those who are visual thinkers; those who are pattern thinkers; and those who are verbal thinkers. Of course there is a lot of migrating in between the groups. Visual thinkers would be “poor at algebra but can do geometry,” Temple said, because of how they think in pictures (the way she does). They might be industrial engineers. Pattern thinkers would be good at music and math, or playing 20 questions; they can’t show their work, either — which made me think of Benj. And Verbal thinkers would have no speech delays. They might become journalists. They are word people; they think words.

Right away I could see something revolutionary here because nearly all Nat’s life I have heard about how “autistics are visual learners,” and it always struck me as a broad generalization and not entirely true when applied to Nat. Nat learned to read by spelling, not by images. I never felt that Nat needed the Meyer-Johnson symbols to understand things; he did so well when I sung things to him or even spelled out loud. Not all the time, of course; some of Nat’s learning is indeed visual but the point here is that people have so many variations in their brains that we do ourselves and our children a disservice by assuming one-size-fits-all. Obvious, but then again, easily forgotten.

Temple talked about how some autistics cannot see and hear at the same time. Their central auditory processing is “messed up.” They have problems discerning detail in sounds. In some cases, hard consonant sounds disappear; the quicker sounds “drop out,” and yet the same person will test perfectly for hearing. “Slow down and enunciate,” Temple advised.

“Then you have the echolalic kid who hears fine if [things are] repeated exactly the same.” You would teach him that words have meaning, using hundreds of flashcards, with the word and the picture. He would need many, many examples of things to understand their meaning and then generalize to their category. But it can be done. “Explain enough–they’ll get it,” she said.

Next Temple described those with “attention-shifting slowness,” whose ability to focus and then refocus is affected tremendously by distractions. Interruptions in conversation may mean utter breakdown in comprehension. “Give them time to process,” she advised.

Further, there are those whose “visual systems are messed up.” Their eye exams would be normal, but images break up. They learn through hearing(!). People who have this problem may see print jiggling on the page, and therefore their reading ability will lag. Temple advised pastel-colored lenses to correct this. They’re available in Target, she said, and she felt that if people don’t try this, something this simple, they’re idiots.

Temple calls ’em as she sees ’em. No mincing of words. Her approach is to identify the brain problem and then find the strategies that will apply. Don’t waste time on changing the world; put your energy into simple corrections and techniques and stay focused on problem-solving. For example: Supermarket fits? Probably sensory — bad lighting. Not always behavioral, but sometimes it is. Find out which it is. If the behavior is not sensory but rather is about attention and pushing people’s limits, then you should not tolerate it–like rudeness at the dinner table. As Temple put it, “Autism is not an excuse for having a fork in your hair.”

Building on her theory that not all autistics have autism in the same way, and that we are talking about individuals with their own particular set of challenges, she brought up the “break it all down into small parts” approach. This is one of the most common forms of instruction for kids on the spectrum. Small steps, small parts. Discrete trials of learning, built one step/layer at a time. Temple blew my mind when she said that actually some folks on the “lower end of the spectrum” do not do well with things broken up like this. With some, you should “use one continuous movement, and it will get through. He must see it all.” She talked about one person she knew whose mom realized this; she had to show him how to get dressed by slowly pulling his shirt on in one connected action, not by doing first arms in sleeves, head in neck hole.

Temple’s basic approach to understanding autism and life is based on common sense, observation, and experience. A mixture of intuition and scientific research. Her overall philosophy seems to be to figure out your kid’s learning strengths and deficits, and work within that configuration. Eventually you will identify learning styles, preferences, and then you can help find hobbies and perhaps one day employment that goes with his particular kind of brain. “Don’t de-geekify the Geek,” she warns. The differences in brains are the sources of our problems and our suffering, but also, of our individuality, our genius and our creativity. After all, “Who do you think made the first stone spear? It was some Asperger off [alone] in a cave…”

The point being that we don’t need to work to change/fix people but rather to help them become the best they can be given their particular issues. Temple’s humble, common-sense approach doesn’t even presume to know how to change/cure. She blows you away with her humane attitudes and by implication, her compassion.

The most wonderful thing about listening to Temple was that even though she is an Aspie, her philosophy and findings are not just applicable to that end of the spectrum. As she spoke, I could apply much of what she was saying to Nat and many of his peers, all up and down that huge spectrum of theirs/ours. Her underlying message is that there is no big mystery here, just a set of problems to identify and solve. Although she did talk alot about therapies, both alternative and traditional, (GFCF diet, sensory integration, medication) and how many are worth trying for one-three months if they are not harmful, she was not focused on a cure, but rather, on how to work with what you’ve got. Something we could all use.

16 comments

wow I've been waiting for you to post about this…so fascinating!!! And makes so much sense when you think about it!!! I think I told you that Dylan is one of 14 kids in our county that has been chosen to do SCERTS…we had our first big all day meeting a couple weeks ago and as we viewed videos of him it was unsettling to see the differences between what he does at home and in school..so now everyone is brainstorming to see what can bridge the gap and what strategies will work for him. There are lot's of checklists to fill out to figure out what his strengths and weaknesses are, and I am on a team with his teacher, ST, and OT. Anyway I've read a few of Temples books and think she is awesome…what amazing insight she gives!!!Haven't seen the movie yet, have to find time to watch it when Dylan isn't around cause it doesn't work well with his cow aversion!!

— added by eileen on Sunday, March 14, 2010 at 8:20 am

Temple is NOT an Aspie… she is AUTISTIC. Just b/c she speaks now, doesn't make her any less autistic.

I heard her speak 3yrs ago now.

She likes to promote the stereotypes of autism and she does this from her POV on the subject. What I did like is that she doesn't "suffer parents gladly". She doesn't find autism "glorious" but something that needs to be educated, and allow the person who has autism become the best they can be. She believes that those with autism must follow societies rules and there is no excuse if they don't and land in jail. She has no use for those that coddle their autistic children… she took a swat and then some at those who asked questions looking to be patted on the head – children sleeping in their beds, behaviour issues etc – she had no use for them.

Temple also stereotypes the "geeks". Neurodiversity/ASAN and it's "historical figure" dx's do the same thing. I've noted that they don't have the support of the "geeks". Geez, maybe that's b/c they have real jobs, real lives and don't wish to be labelled as having autism. Maybe they don't find it "glorious".

SCERTS is the same as ABA, Floortime etc. My FSW went to hear them speak a couple of yrs ago. Wasn't IMO worth the $$$ to go. The biggest difference she found was that it was "parent/family" first. ABA/IBI here is not… yet they were at this meeting and commented on just that… My FSW's Comm Living was the only organization there that was "family first".

All of these therapies are the same at the core. I've researched them all… ABA/Floortime/Miller/SCERTS… etc. Which means… teach, teach, teach…. push, push, push… and be flexible about it… everyone learns differently.

— added by farmwifetwo on Sunday, March 14, 2010 at 8:37 am

It's true, that Temple did not i.d. herself as an Aspie — I did that. She believes fervently that Asperger's should be folded right into the spectrum. And she does indeed hold all of — autistic or not — to a high standard of humanity. I loved the way she came up with job ideas for each and every kind of brain issue and level of severity. It validated my own experiences with Nat and made me feel the energy to do even more. You are right, about her attitudes towards behavior and teaching ones kids manners, no matter what their issues are. I found that very refreshing indeed. I didn't find her judgmental, btw, but empowering.

— added by Susan Senator on Sunday, March 14, 2010 at 8:41 am

Just wanted to clarify that SCERTS is nothing at all like ABA….Dr. Wetherby, the co-creator of SCERTS has nothing kind to say about ABA,if I remember correctly she likens it to "breaking a horse" but yes, SCERTS does advocate 25 hours of being "actively engaged" per week, which I think is a common thread in most autism therapies.

— added by eileen on Sunday, March 14, 2010 at 8:49 am

I love Temple Grandin and the way she says things as she sees them. I sent to a SCERTS conference a few years ago. They seem to always bring in a speaker who has some form of autism and is an engaging speaker.
She's right that discrete trials are not best for all, what she described (putting the shirt on in a fluid motion) is something that ABA also uses, called chaining. Help the child through the entire task, letting up with your assistance as they become more and more skilled. It is much more complicated than that as everything ABA usually is, but gist remains the same. It is a wonderful way to teach, hands on, letting up with assistance/prompting in a very individual way. It is complicated by data collection, which teachers need to take but you parents out there don't.
Temple is a master figuring out the logistics of how to get things done in her work with animals. I remember driving cross country and that the highlight of the trip was seeing the cattle farms that use the circular chutes that she has designed. Talk about being a (autism) geek… She is wonderful.

— added by michele on Sunday, March 14, 2010 at 9:25 am

Insights inside the autistic mind from autistics themselves are invaluable to me. I would have loved to have been there.

Susan, if you haven't read "The Fabric of Autism" by Judith Bluestone, you should.

— added by ASDmomNC on Sunday, March 14, 2010 at 10:00 am

And 90% of autistics will not be like or have the advantages of Temple Grandin. Most won't be able to speak, advocate for themselves, win awards and so on buy will be subjected to residential treament centers for the next 30, 40, 50 years. Temple, to me, does not represent what is going on today in the real world of autism.

— added by Anonymous on Sunday, March 14, 2010 at 11:07 am

I would have loved to hear this. I love that Temple is no-nonsense. And I love that she gets right to what we can DO to help our child rather than getting stuck in dx.

But I will say, it's not that simple. Like you said, not all black & white. My son has visual & auditory processing problems. He also has an eye that turns in when it tracks. Something pastel colored glasses won't help. And sometimes Autism is a reason he has a fork in his hair. He has poor fine motor skills. Very poor.

But I do love that Temple is involved, advocating, and sharing her information.

And thank you for sharing. Refreshing.

— added by Brenda on Sunday, March 14, 2010 at 11:22 am

Anonymous, that's simply not true. About 1 in 4 people on the spectrum has a below normal range IQ, and some of those may never speak, but I'd hardly call less than 25% "most." Most of us can speak and self-advocate, though we may need assistance in various areas of our lives.

I really like how Temple thinks about the spectrum–it resonates with me. I'm a mix of all three thinking types, most strongly verbal. I'm good with detailed pictures and patterns, terrible at processing visual and auditory information at once, or multiple language imputs. I need sensory and executive function supports, because when I'm in a good place physically and mentally my social skills problems don't seem to be as bad–I can follow conversations and make friends much more easily. We're all different and have our specific concerns.

— added by Ali on Sunday, March 14, 2010 at 5:30 pm

My thinking is that even if it were true that many many autistics could not speak, it doesn't follow that they are herded into "residential treatment centers." What is that? Residences are generally not the armpit of the world. Every single staff person I have met at Nat's school residential homes is sweet, warm, and so damned hardworking it would put most of us to shame. So that's around twenty that I've met so far. They show up at these games even if their kids are not in them.

I guess I'm tired of the assumption that a group home or a residence for those who can't live independently is a nightmare come true. The parents I meet whose kids are in residence miss their kids like crazy, like a wound in the heart, and yet, they talk of how much their kids have learned. And how their kids ask — ask — to go back because they're so bored at home (Nat included). Let's not jump to conclusions about what autistics can and cannot do or about what their parents and caregivers are like.

— added by Susan Senator on Sunday, March 14, 2010 at 5:39 pm

Happy for you Ali but you can't really compare your abilities to those of severely affected children.

Susan, most parents I meet do not want their children in residential homes as young adults. You are lucky you have a good one but many are not too desirable.

— added by Anonymous on Sunday, March 14, 2010 at 6:03 pm

Over the years, I've spent time in probably 30 group homes, both for kids and for adults. They are not "residential treatment centers", they are the individuals' homes. There is a difference between children's group homes and those for adults, there are fewer staff and fewer housemates. After years of working with children, I walked into an adult group home for the first time and was blown away by how beautiful their bedrooms are. They are decorated by the families and completely personalized and comfortable. If there are no parents (some of the older people came out of state institutions and ahve no family), staff decorate with and for them. All of these people continue to learn and grow, in their unique and individuals ways, throughout their lives, the same way that all of us do.
There is supervision, administrative oversight and constant evaluation to continuously strive to improve services.

— added by michele on Sunday, March 14, 2010 at 9:53 pm

http://recoveringmatthew.blogspot.com/2010/01/i-will-not-be-watching-hbo-movie-on.html

— added by Anonymous on Monday, March 15, 2010 at 11:58 am

Like the neuro-typical population, we all learn in different ways. Likewise, those on the autism spectrum do too, just as Temple Grandin points out. I fully agree that the focus should be on helping each individual be the best they can be, rather than wasting energy looking for quick fixes. To date, the safest most effective treatment is still a behavioral approach. Slow and steady wins the race.

In regard to group homes, I have two children with very different disabilities. One is a severely impaired, 32 years old living in a group home. It is and has been extremely nurturing for my daughter. In fact, it is such a welcoming atmosphere, that my 19 year old daughter with high functioning autism, is hoping to be able to move in to her own group home one day, so she can live with her peers and have a life of her own away from her parents. Allowing your adult child to live in a group home is not something that should be feared, and it does not make you a bad parent. Parents and their disabled adult child do have a say in where they live. Before accepting a placement, the individual goes through a screening process which enables them to try it out and be satisfied with the home. You don't have to accept something that is less than your expectations. The right placement and the right home can be very empowering to the individual. It can make all the difference in whether they feel involved and a part of something or feel isolated and alone.

— added by Sherry on Thursday, March 18, 2010 at 10:38 am

I will be attending a presentation by Temple at an autism conference in Toronto this November. I cannot wait. My son was diagnosed three years ago now – and Susan, I remember your book being such a lifeline to me at that time of desperation – and I still feel that what I know about autism is a drop in the bucket. I wonder if we parents of autistic children ever feel as if we know enough about this condition affecting our children?

— added by runningforautism on Thursday, March 25, 2010 at 10:09 am

Most of us don't know much more about autism and we need to face everything on having this disorder. I couldn't do it alone, symptoms and how it has been very difficult for me on dealing it.

This really means a lot to me on knowing about this disorder you've educate me on dealing with it.

— added by Residential Treatment on Wednesday, March 31, 2010 at 11:50 pm

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