Love, Intimate Relationships and Autism

This is a post from a few year back that remains highly relevant, so I thought I’d repost:

Teenagers and young adults with Asperger’s Syndrome or with High Functioning Autism need some targeted and extra help understanding and negotiating romantic and sexual relationships. Moving from Social Skills or Social Thinking/Cognition curriculums to dating, sex, love, and adult relationships is no easy task when your primary difficulties are recognizing and understanding non verbal communication, emotional fluency and regulating sensory experiences.

This is a wonderfully written piece in the NYTimes.com called Navigating Love and Autism. Compelling in it’s depth, this article captures many of the challenges particular to couples struggling with Autism Spectrum Disorder.

The first night they slept entwined on his futon, Jack Robison, 19, who had since childhood thought of himself as not like the other humans, regarded Kirsten Lindsmith with undisguised tenderness.

This is an honest account of their struggles and one that provides glimpses into what it must be like for a young man with ASD, who, despite feeling love and romance for his sweetheart, has to tell her (and I assume because of some sensory overload issues), after she smiled at him one morning, as she leans in for a kiss, seeking his lips, he turned away, I don’t really like kissing, he said.

It’s a touching piece and although having ASD adds a particular burden to relationship, I wanted to reach out and tell the young man that many of their struggles are common to the confusion we all feel at times in relationships. You want to put your arm around his shoulder and smilingly tell him you know just how he feels when he’s not sure what his girlfriend wants from him. Here’s an example:

One might start over Kirsten’s request that Jack hug her when she came home from school, or his perception that she was already angry at him when she came through the door.

The more we argue, the worse it gets, Jack said once, close to despair.

One night as Kirsten cooked dinner, he peered into the pan where she was sautéing vegetables to comment on the way she had cut the cauliflower.

It’s too big, he explained. It won’t cook through.

It’s better when it’s not all mushy, she insisted.

No, he said. You’re just doing it wrong.

Eventually, Kirsten, unable to contain her tears, fled to the living room.

What I want, she told him when they analyzed their clashes in less-fraught moments, is to be held and rocked and comforted.

Book for Children with Anxiety, Worries

Book for Anxious or Worried Children by Sanford Shapiro

“Sanford Shapiro has written a sweet and insightful coming of age children’s tale, beautifully illustrated, chronicling the parallel journeys and triumphs of courage and connection over fear, undertaken by an unlikely but lovable adventurous pair – an endear- ing youthful turtle and an inquisitive young cub bear – who we first meet as they’re trying to come to terms with what seems like an uncertain world. Until comes the fortuitous day when they each stumble upon – separately and then seemingly in unison – that wellspring of inner strength and hope that emboldens and trumps all – the light that shines from within and without, stripping away darkness and self-doubt and illuminating the way forward for us all.”

-S.J. Kane Writer, editor and international development professional, Commission for Legal Empowerment for the Poor. Recently retired at the United Nations and the World Bank

“I loved it and my kids loved it! A Light Within is hopeful, encouraging, and empowering. It helps children find their inner strength and gives them the courage to succeed in life. A book kids and parents will love! With a powerful message that will help your kids overcome their worry and fear. What could be more important than to teach kids resiliency?”

– Andy Sapp, Ph.D, Founder & CEO, Novitas Academy for Boys, and Cherry Gulch School for Boys, Emmet, ID.

-Available in Paperback or Kindle

Dyslexic Advantage

Dyslexic Advantage
www.dyslexicadvantage.org

Dyslexic Advantage is a 501(c)3 non-profit
charitable organization whose mission is to
promote positive identity, community, and
achievement focusing on dyslexic strengths.


The Sun or The Moon?

Sometimes I feel like a bit of a downer and in contrast to other popular LD-centered websites, because a fair amount of my writings, posts and presentations concerns the risks and vulnerabilities that can go along with having a learning disability or learning difference. It’s a little out of character it would seem, because those who know me, see that I’m a glass half full person and one who tends to look for and find positive aspects and opportunities in problems.

And, I’ll be the first to emphasize there’s a tremendous need for uplifting, inspirational and true information about upsides of struggle, and of promoting success stories related to dyslexia and learning differences. I hope and aspire to provide some of that as well. There are several great organizations that do just that. Dyslexic Advantage and Yale Center for Dyslexia and Creativity are two that come to mind right away.

While working for many years with children and adults with learning differences such as dyslexia, I’ve found that people with such differences and conditions need role models, they need hope and they need a sense of how to access strengths, gifts and talents that are either dormant and laying in potential wait, or even inherent in brain and learning differences. Thomas G. West writes eloquently and convincingly on this subject in his seminal book, In the Minds Eye and in his most recent one, Seeing What Others Cannot See

We each have to bring to the table what we know best, our selves and our stories. In my case, having worked in and consulted with schools for students with learning disabilities, and also in treatment center for children, teens and adults with primary emotional and behavioral challenges, I’ve seen first-hand the results of the trauma, shame and hidden isolation, which often accompany school struggles and repeated failures. The magnitude of scar tissue left behind can be deep, impactful, and long-lasting.

In fact, as an example, a few years back, the NIMH and Hazeldon, released statistics showing upwards of 60% of adolescents in residential treatment for substance abuse have learning disabilities. I have seen and experienced this overlap between school stress and mental health struggles in my own family. Even the great celebrities and success stories like Philip Schultz, a dyslexic adult and winner of the Pulitzer Prize for Poetry, have wounds that cut deep. The success stories show us what’s possible. They show us realized potential when opportunities arise. And all too often they show us people who’ve succeeded in spite of their school stories and not because of them.

For these reasons, it’s important to me to continue shedding light, and to help provide access for other voices, for the un-celebrated, and the less successful—those who are too often left in shadows or worse, in situations of despair and desperation.

So, where’s the fun in all this? Well, the pleasure is knowing that when we live in awareness of both sides of this coin, the upsides and the risks, the talents and possibilities and the scars and hidden trauma, we do our children and ourselves better service. Our children’s happiness can be enhanced when we don’t turn away from the shadows, indeed, that shadows dissipate with light.

Sanford Shapiro

Bad Ideas Stay With Us

Sort of a timely recast of this video, given the supposed controversy of things like “science-based.” In the video, Louisa Moats describes the disconnect between science and practice.

I would say that there are a few different sides to this issue. On one hand, Dr. Moats points us into a critical area. Teaching spelling to students is important, and not just for it’s own sake necessarily (though that’s fine too). Though there are tools to help poor spellers work around their difficulties (predictive text, spell-checkers), those take extra time and writing is more than spelling. The real emphasis and missed golden nugget here is the connection between spelling and reading. When the hand writes and spells words, by matching sounds with letters, areas of the brain important for reading development are activated. Listening to sounds and representing them with letters, letter patterns and word parts (like roots, prefixes and suffixes) helps activate cortical circuits needed to develop and improve reading.

The travesty and the aspect worthy of outrage as Dr. Moats suggest, is that this science of reading and spelling and overall language development isn’t taught or understood in the majority of university level teacher education programs.

But there’s another important piece to the pie that the phonics camp sometimes misses in their expertise about language. What’s sometimes overlooked, is the science and overwhelming clinical evidence of the importance of an educationally therapeutic alliance between teacher and student. In therapy this is the “therapeutic alliance,” deemed perhaps one of the two most important ingredient in success and personal growth. In teaching students who are scarred with feeling different and “less than” or “not good enough” from an academic learning point of view, this is no less important. Developing the critical skills of connection, vulnerability (not being the “sage on the stage”), and challenge between teacher or tutor and student is as important as matching sound to symbol.

A child-friendly space in Mosul, Iraq. Photo: Arete/War Child UK.

A group called War Child based in the UK, dedicates itself to helping children and families in war-torn areas all over the world.

In In this Good.is article we see one of its projects, bringing mobile learning and libraries to children in desperate need. So much is needed of course, in the way of basic necessities in war-torn areas, and books and playful learning can mediate the stress and trauma children have after being subjected to the horrors they have nothing to do with.

One of the more controversial education conversations I hear and have been a part of concerns labeling kids. Over the years I’ve met lots of parents and teachers who argue that labeling is a negative thing. I’ve been to lots of dinner parties where, as soon as someone discovers my profession, the subject comes up, and sometimes heatedly. A few of the more consistent “negatives” presented are: “Labels mark a kid for life and I’m afraid that can hold him/her back,” “Labeling my child will lower expectations” and “Everyone today is labeled and then drugged.” Anyone whose child has been helped by such labels argues the other side.

Are diagnostic and special education labels like ADHD, Dyslexia, and Autism Spectrum Disorder helpful or not? Do these terms box children in and constrain them, or do they provide a safe container in which to play and develop? Are they too restrictive or are they safety harnesses that are absolutely needed?

In an opinion piece from Education Week, Labeling Students With Disabilities Has a Downside the writers suggest that Special Education Labeling has upsides and downsides.

Do you have an opinion either way? Is labeling a helpful thing or prejudicial and limiting?

 

 

 

 

 

 

 

 

 

 

 

Sitting at a desk alongside two of his grandchildren, Kimani Maruge first attended school in 2004 at the age of 84.

 

Great examples of older people living joyfully and with purpose.

In this article from Positive.News featuring ballet dancing, athletics, art, and going to school, we meet seven older people living well and showing us all that it is usually not too late.

Sitting at a desk alongside two of his grandchildren, Kimani Maruge first attended school in 2004 at the age of 84. He was taking advantage of a decision by the Kenyan government to introduce free primary schooling. In 2005, Maruge boarded a plane for the first time and travelled to New York to address the UN World Summit on the importance of free education. Maruge died in 2009, but older people in Africa have been going to school ever since.

Lost in My Mind

This article (link above) hit home, and is one of the best and most honest accounts of the reality that many kids, teens, and adults with dyslexia face. Even a successful athlete, reaching the pinnacle of his sport (a Stanley Cup winner) Brent Sobel wasn’t immune from feeling “not good enough” and worse. As a child, demons developed in the head of undiagnosed dyslexic Sobel. In this article, he describes his successes, his descent into fear and anxiety, and his recovery from alcoholism. In addition, we learn about his current mission to help other kids from having the struggles he has.

It’s a lengthy, and at times searingly honest story, and well worth the read.

Below are some quotes with a comment or two.

“I couldn’t understand how schoolwork seemed to come so naturally to other kids. It made me feel so left out.”
-The beginnings of isolation and feeling apart.

The older I got, the more trouble I had in school. When I was in Grade 8, my teachers tested my reading ability. I was reading at a fourth-grade level. But again, nobody seemed to know what to do about it.
-We know so much about the benefits of early and appropriate interventions. And yet schools still leave many kids left out from identification. Early identification can lead to good treatment, inclusion and hopefully, an emphasis on discovering strengths and interests as well as remediation.

“Despite all my hours on the ice, I was never the fastest or the most skilled player — but I’d be damned if anyone was going to outwork me.” …”I appreciated how much work went into the day-to-day operation of the farm. It taught me that hard work is the foundation for success.

-One of the potential benefits of any challenge and struggle. As well as hats off to small farmers and ranchers!

“I always thought that was ironic. Here’s this kid who everyone thinks is an idiot and is only going to make it in life because he can play hockey. But when I was drafted into the NHL, my biggest asset was my brain.”

“All those times in between games when I was alone with my thoughts. For me, I hated being in my own head like that. Who wouldn’t if you had grown up questioning your mental capabilities every single day? Even achieving my dream of playing in the NHL couldn’t erase the destructive impact of not having gotten the right help when I was in school — I felt … out of my mind … or maybe that I didn’t belong.”

“I couldn’t take the sense of crippling loneliness that I was feeling when I was by myself. It exhausted me.
I turned to alcohol. It kept me numb.”

LD and Self-Harm

“I remember when my kids were much younger they would ask me to read them bedtime stories.”

And after his personal struggles come to dominate-

So I went to rehab for 45 days.
“I can say without a shadow of a doubt that those were the most important 45 days of my life. I believe rehab saved my life.
I’m not the same person I was before I went, and I never will be. Rehab helped me to understand what my life is now. I learned how to meditate, how to find peace. But there was one lesson that resonated with me more than any other.
To some, accepting yourself for who you are may sounds like words, but it’s a mindset. It’s a way of life.”

Post Rehab:
“When I came out of rehab, I realized the damage I had caused to my friends and family. The people I had taken for granted, the relationships I had thrown away — everything became black and white. My learning disorders led directly to my alcoholism. And after the loss of my identity as a hockey player, I just wasn’t operating at full capacity.”

“I don’t want anyone, no matter their age, to feel like they’re stupid. I don’t want somebody to feel useless because of dyslexia, dysgraphia or anything similar. My future is clear to me now. I want to dedicate myself to helping children with learning disabilities. I’m working on a children’s book based on the characters I created for my own kids, Pinky and Greenie. There’s tremendous work being done by people around the world to not only help kids, but also to help adults who suffer from learning disabilities.”

“In conjunction with this article, I am proud to announce the launch of my new website, which will highlight the extensive work I will be doing with several outstanding dyslexia and learning disability support organizations.”

By Sanford Shapiro

iStock / ramsgaard

 

 

 

 

 

 

 

 

 

Feeling and knowing something experientially is different than hearing about it or only understanding it intellectually.

You could be super bright and intelligent, but when your reading is marked by slow and inefficient decoding of single words, its hard to comprehend what you’re reading.

Makes sense, right?

It’s the most basic and common sense awareness someone can have about why there’s often a gap between “listening comprehension” and “reading comprehension” for students with dyslexia.

When you’re bogged down when reading individual words, getting meaning from what you read is reduced. There are other factors that impact reading comprehension, but this is the ground floor.

Now, living abroad and being a beginning Spanish student, I get it. I get a little more than before. I can feel it a little bit in my bones.   I’ve been an expert in reading and dyslexia and learning differences for a long while.

But… knowing it personally is different than hearing it intellectually and even clinically.

I’ve heard it said, and I’ve said it myself:  Since most people with dyslexia struggle with the mechanics of language (rather than higher order language skills), learning to read and spell is similar to learning a second language. Given that we know that the core weakness of dyslexia is the struggle to translate speech sounds to the graphic language code (letters, syllables, letter combinations), this makes almost perfect sense.

For me however, understanding this connection between decoding and comprehension was at first an intellectual one.  Then over time, working directly or indirectly with close to a thousand kids with learning differences, my sensitivity, understanding and compassion grew. Over the years I saw and to some extent felt their frustration. It was however,  from that comfortable distance, a clinical divide. I could “appreciate” the issue more personally, but not so much from the inside.

Now as a Spanish student living abroad, I get it more than ever!

Since the rules and patterns and irregularities of Spanish are different enough from English, when I read out loud in class I can feel my comprehension dip significantly as direct result of my slowness in decoding. I’m pretty accustomed to looking at language from a structural point of view. and perhaps somewhat talented in learning language.  Still, if I try and read Spanish paragraphs too quickly, I don’t know what I’m reading. I now know the individual sounds and letter correspondence, but they’re not yet automatic.

The other reality is this: I’m in a class where all my classmates are in the same boat. So, though I don’t like the feeling of not knowing, my peer group can relate.  We’re all in need of occasional life preservers. more time, explicit instruction, and compassion and empathy from each other.

When you’re feeling like you’re the only one, as most kids with dyslexia feel, it’s a lonely and shaming place to be.

Sanford Shapiro

Nike Designer Says Dyslexia is a Gift

Nike Runner and Chief Designer on his sense of  dyslexia and design.

Nike designer says dyslexia is a gift

YOU HAVE A LOT OF LOOSE BITS OF PAPER AND SKETCHES IN THIS OFFICE. WHAT DO YOU LIKE TO DRAW?

Sneakers, body sketches, architectural retail spaces. I’m dyslexic, so my first real language was drawing. I doodled everything.

I find that I listen better when my hand is busy. And I find that when I am listening intently and gesturally moving my pen, some interesting things come out. I came to this idea that my dyslexia is not actually a burden – it is a gift because it makes me look at the world differently.

 

From NPR Series “Been There”

Adjusting to college campus life can be particularly challenging when you struggle with the mechanics of social life because of underlying social thinking challenges endemic to students on the Autism Spectrum.

Life On Campus When You’re On The Autism Spectrum