Susan's Blog

Monday, March 26, 2012

Education is the answer

In 1993 when Nat was first diagnosed with Pervasive Developmental Disorder, (PDD) under the “Autism Umbrella,” I asked the doctor what do you do about that, what is the treatment?

“Education,” he replied. He went on to tell me that no one really knew which approach was best, and that there were many schools of thought. “It is up to you to observe and figure out what works for Nat. When something is right for him, you’ll know,” he continued enigmatically.

But I envisioned Nat at school — though back then I could barely picture that, he seemed so little and vulnerable — and this advice seemed wrong.  He needed me, not school, I remember feeling. He would be bewildered by school. Lost. But the doctor was saying that he should actually be in school for as many hours as possible (No one said “at least 30-40 hours a week of intensive one-on-one education. If he had, I would have resisted it.). I did not believe school would work for Nat.

As pre-historic and simplistic as his diagnosis and advice were, the doctor, bless him, was completely right. School, education, a teaching environment has made the greatest difference in Nat’s life. Even when he was in programs that were not the best, he progressed, he did what he could. And when he participated in programs that were right for him, he took off. (Please do not read this as a paean to ABA, just because that was Nat’s best school program. I am not convinced it was the ABA per se that did anything for Nat; more likely it was the one-on-one attention and repetition, and very kind teachers, that did the job for him.) And no, he did not take a rocket ship to Normal. He did not de-Auticize (my favorite term, coined by artist, autism mom, and dear friend NancyBea Miller.) Nat maintains his diagnosis — or one of them, they’ve changed a lot over time, but Nat remains basically pretty deeply involved with autism, PDIA (my own jargon, feel free to use it and make up your own, more accurate versions).

Nat’s education helped him in so many ways. He learned the importance of paying attention to others, of trying to communicate. He learned all the basics: letters, numbers, shapes, reading, writing, typing… And then when he was 14 we had a conversation with the school that made my heart hurt: they asked us to start shifting him out of academics and into “pragmatics.”

This hurt, but it was hands down the best decision we ever made for Nat so far. Why did it hurt? It hurt my own vanity, to realize once again that this child of mine was not [you fill it in]. He was not going to learn history, chemistry, algebra, or read books at his grade level. He was going the vocational track. He was going to have to focus on what I thought of as the Dull Kind of Adult Life. He was going to have to learn ugly things like food preparation, laundry, house cleaning, street safety, community behavior & appropriateness. No Latin for Nat. Essentially, nothing I could brag about to anyone. Learning Activities of Daily Living, ADLs, and training in basic job skills like serving meals or making boxes — who in my world did that? Who in my family of doctors, lawyers, educators? My Harvard Medical School Dean neighbor?

I emphasize this ugly shame I felt to illustrate that it was all about my own vanity. That and the death of certain hopes that I had/have for my children, and why not? I belong to a social class that believes in the American Dream, of working your ass off and educating yourself to reach the pinnacles of what the world has to offer.  In my world, it is not just a given that you do college, you also have to go to graduate school. You choose a career that hopefully helps the world in some way. You live in an area where they have the best public schools (you never do private because you believe that social programs and public sector investment are what make the US great), you have children and you pass on the same values to them.

So what happens if your child does not fit that mold? Well, in my case, once I got over the fact that there was only one way to view success — which began with an Ivy League education — my world broke wide open and beautiful things spilled out, like a treasure chest. I laid my eyes on the most spectacular thing of all: Nat was really learning and using what he was taught. Nat could generalize those new skills, too. He learned how to do laundry there, and so he could do it here (with assistance). He was used to cleaning, shopping, making lists, keeping himself safe and healthy, because that is what he learned in school. His mind was not wasted; it was ignited. Suddenly everything made sense to him; everything had real-world application, and for a guy who craves context, that was just perfect for him.

Thus Nat — still PDIA — made the leap to living outside of our home, and to working out in the world with hardly a ripple. Do you realize how marvelous that is, a guy with as many challenges as Nat has — (yes, he has often been officially termed “low functioning,” and “severe.” Even by me, sigh.)?  It is nothing short of the American Dream.

If you open your mind, your definition of education to fit the full spectrum of human beings, then ADLs and job training are truly valid forms of schooling. I believe that all children would benefit from this shift in perspective and approach. Sure, the classics matter. Of course most academics still do matter. But, in addition to that, we must train our children to live in the world. All children, whether diagnosed or not, should be trained in social competence, independent living, and vocations. Education is and always was the way out of darkness.



Thank you for this Susan. You have such a perfect way of describing your experiences and when I read them I realize they mirror my own.

You have no idea how comforting it is to not feel alone in this journey.


— added by Sunday Stilwell on Monday, March 26, 2012 at 9:57 am

Thanks, Sunday!

— added by Susan Senator on Monday, March 26, 2012 at 9:58 am

“I believe all children would benefit from this approach”… Susan, they use to and then the world bought into the “all children should go to Univ”, “all children have to finish highschool and we’re not doing apprenticeships in highschool anymore….” and then they wonder why so many fall through the cracks. Biggest mistake the gov’ts, social services and the school system ever made. Which is why yesterday I said to another parent “we’re bringing him home after this classroom. We’ll never find another like it and I’m not sending him to school for respite. He can come home and learn to farm.”

Another is the “repetition, 1:1 learning”. Agree. But not training. Not doing the absolute same thing over and over again until it’s mastered and the child cannot transfer it out of the setting it’s taught. Nobody learns that way. Nobody can sit unending hours at a time. We learn by teaching, changing things up (different materials/setting), exercise, travelling and fun. I met a possible respite worker yesterday – youngest went to a b-day party (yes, the autistic one) – and her comment was “it’s very hard to find good people in the system”. The family who’s home we were at our boys are in the same self-contained classroom and we were discussing options (which as of last year are even less and farther away) and where we’d been etc.

“Finding good people in the system”….. shouldn’t be a battle nor so few and far between.

Maybe one day there will be a program our boys will take at a college or Univ. People go to Univ in their 80’s+…. there’s no time limit. But good training programs, good apprenticeships…. if only they still existed in school where people can try different ones to see if they like this or that.

— added by farmwifetwo on Monday, March 26, 2012 at 10:01 am

FW2: but college and university don’t have to be elitist places either. If they would open their doors further to kids like my Nat and continue his job training and communication skill-building, he would benefit tremendously. Why should education for anyone end at high school? If by education we mean that the person continues to develop and learn how to be more effective in life, then I believe Nat’s education should and can continue. Call it what you will (college or just continuing ed or training program),if he continues to learn in a systematic and applicable way, it should be a possibility for him. This is already done here and there throughout the country. Check out Taft College in Bakersfield. Check out the Community College Consortium for Autism and Intellectual Disabilities and their work in opening community colleges to guys far along the Spectrum by creating programs that directly help guys like Nat learn now that he is more open to learning! ( Disclosure: I work for CCCAID now. And I do that because I see that they are the future for our kids.

— added by Susan Senator on Monday, March 26, 2012 at 10:10 am

So true. We were just discussing yesterday that, in our society, there’s the Ivy League at the “top,” and people “only” going to a state college are already “inferior.” By that yardstick, people who do “common labor” are barely worth consideration.

Having a child, relative or friend with a disability (or from a different class) allows- demands- that we break out of that world view. As you so openly describe, that’s not a simple process- it goes against all of our training. So thank you for posting.

— added by Rob Gross on Monday, March 26, 2012 at 11:44 am

I know. At cocktail parties I have to remember to stand tall when I tell people Nat is in a “group home” and that this is a good thing. Or that he stocks coolers at CVS and how amazing that is.

— added by Susan Senator on Monday, March 26, 2012 at 11:48 am

YES YES YESYESYES. And thank you.

— added by Shannon on Monday, March 26, 2012 at 1:06 pm

I also have a “Yes Yes Yes!” response to your cocktail party actions.

— added by Rob Gross on Monday, March 26, 2012 at 5:12 pm

Perfect, Susan….just what I needed to read…I, too, value the 2 diplomas hanging in my closet…in RI, the “high stakes” standardized testing is making it prohibitive for my son to graduate with a diploma…having worked on ADLs for YEARS with a lot of success, I worry about him languishing as he enters high school, as he will more than likely take the “pragmatic” route…but as a wonderful advocate once told me “Throw EVERYTHING educationally at him…some will just miss, but a lot will stick…”

— added by Roberta on Monday, March 26, 2012 at 5:27 pm

I would keep it as simple as possible…just ask yourself, “does he seem happy?”…you will instinctively know the answer. If it’s “yes” let it be…only if the answer is “no” do you need to step in. He sounds to me like a very happy guy…thanks to all your efforts, Susan.

— added by Candy on Monday, March 26, 2012 at 8:22 pm

This is perfect. How do you always manage to get inside my head so well? 🙂

— added by Liane on Tuesday, March 27, 2012 at 10:03 am

My daughter, now soon to be 45, went to Curry College, Milton,Mass. THANK GOD ! At that time, she already had been diagnosed in Middle School, as “Learning Disabaled.” Now I know she has Asperger’s, but nonetheless, she derived a great, helpful education during her years at Curry ! Her self confidence zoomed, her creativity was paramount,she learned organization and yes,list making.
Today, she is married, ( got married at age 40),does not have children, and works as a professional photographer.
Although she still stuggles everyday, she has accomplished more than I ever thought possible.
No she has not read “War and Peace,” or figured out math, or history or chemistry, but, (among other wonders), she has had a photo published as a tribute to NYC Firemen during 9/11, and it is displayed among all the other great photos our country has at the New York Historical Society.
Who could ask for anything more?

— added by Patricia Steffens on Tuesday, March 27, 2012 at 10:46 am

Hi Candy,
I don’t know if maybe you sent this to the wrong post? Although, yes, Nat is a happy guy! But mostly all I mean here is to point out the benefit of education over any other therapy. Be well!! –S

— added by Susan Senator on Tuesday, March 27, 2012 at 12:06 pm

Not sure how you could have sent your son to an ABA school with that thought that it wasn’t the ABA? One to one, repetition, are all hallmarks of ABA. Consistency in interactions and interventions are key. And yes the connections that people make are hugely important and are the reason for so much motivation, but you can’t completely separate one from the other. Without learning to pay attention through repetition, to follow instructions after repetition, and to attend, how could Nat have been in the right place to learn those job skills? How do you think that Nat learned those self help skills, those “food preparation, laundry, house cleaning, street safety, community behavior & appropriateness” skills at an ABA school, without ABA being part of the equation? It’s baffling. I am so proud of my association with ABA, I KNOW that so many kids and adult have been helped because of it. Is part of the motivation and success the love and caring I’ve tried to bring to it? Probably, but the true ABA and not the “cookie cutter” version that is out there, is a big part of it. I am confident that the kids and adult I work with and consult with benefit from ABA. It is a science, not simply “40 hours of discrete trial”. It comes on many forms and with many subtle individualized segments. And I also know that I love each and every one of “my kids”. It is not until the skills are firmly in place and the behaviors under control (by teaching replacement skills and reinforcing and teaching communication skills) that I’ve been comfortable loosening up the “reins”, and when the students are ready, it works. So I wouldn’t be so sure that the ABA isn’t responsible for at least some of Nat’s success. Michele

— added by michele on Tuesday, March 27, 2012 at 8:13 pm

Hi Michele,
You sound kind of pissed off. I can understand that; you think I misunderstand and misrepresent ABA. I don’t think I do; I think, however, that my main point is that I don’t believe that all the data and laboratory-like discussion of stimuli and response, or all the emphasis on neutral affect and redirection, are the best parts of what happened for Nat at the May Institute. It was the teachers’ willingness to get to know Nat and respond to him that made the connections he grew from. If some of that was due to their ABA training, that’s great. I’m sure it was. But I am talking about the personal touch: the spontaneous home phone calls, the creative ideas the teachers came up with, their love for Nat, those are the things that made the difference for Nat. And also, his own growth and development.

— added by Susan Senator on Wednesday, March 28, 2012 at 8:48 am

Sorry Susan, I didn’t mean to sound “snarky”;) Any program is only as good as the people who are in it. I was looking at it broadly, if it wasn’t for ABA, the program never would have developed into the program it is or attract the kind of staff who want to learn and teach. The data and research and all of that is important, but without people who are invested in individual students, it means nothing. I was just looking back, with a bit of nostalgia, to all of the years of teaching I did, using the principles of ABA and how loving and generous about 90% of the people I worked with were. And I know for sure that we followed ABA with love for our students driving much of what we did. Michele

— added by Michele on Wednesday, March 28, 2012 at 12:07 pm

As a former educator myself, I cannot agree more. Education is the key to everything, even if it’s meant taking a hard look at my beliefs about childhood, progress, and what it means to be successful. Thanks for this post!

— added by kim mccafferty on Friday, March 30, 2012 at 10:35 am

I love reading your blog and hearing your perspective with an adult child with autism. I have 3 sons also and my second son is autistic and just turned 6 yrs old. He has been in an all day school program since he was 3 plus all the therapies that come along with autism. I couldn’t agree more that education is the key. Teddy has made incredible progress and will hopefully continue to do so. I know you have said that the Nat’s “label” is “low functioning” but hearing that he is working at CVS and doing stock work is incredible. The unknown future is very scary and hearing about Nat’s job and group home helps shine light on that dark tunnel. Thank you:)

— added by Ann on Friday, April 6, 2012 at 11:36 pm

I just discovered your blog through a recent COBAP posting, and wanted to tell you that I love your unfiltered honesty – it is so refreshing! This post reminded me of a quote I read a while back from Dorothy Rodham (of all people!) – something to the effect that success in life is not measured by where you wind up in life, but how far you went from where you started. And I think that really should be the measurement for all of us. It’s true for our children, and it’s true for us parents. To only be looking at some end goal (be it an ivy league education, or a certain level of professional success) is to be limiting ourselves.

And I agree about your comment regarding Nat’s education and it’s benefits. Personally, I find it difficult to discern if the progress my daughter has made is due to her education, or if she is following her own natural trajectory of growth. The obvious answer is that it is both. I credit the amazing educators she’s been fortunate enough to have, as well as her own hard work and spirit. But at the end of everyday, I will always protect the glory that is truly her own.

Thanks so much for the post!!

— added by Amy on Tuesday, April 10, 2012 at 9:51 am

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