In autism, we confuse IQ with happiness

Does being smarter make you happier? Not necessarily, says Dr. Evdokia Anagnostou, a child neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview.
 
In the general population intelligence predicts school success, which correlates with “getting a university degree and money, our two obsessions,” Dr. Anagnostou says. “But IQ doesn’t predict how good life is, the quality of your life, or life satisfaction.”

And this is particularly true among people with autism, she says. “Parents are really focused when their child is diagnosed on figuring out the child’s IQ, because of the assumption that kids with autism and high IQs are doing better. And while they do have the potential to integrate better or easier or with less intervention, it’s a potential. In practice, there are many issues that make that original assumption wrong."

One is the high rate of anxiety and depression in children with high-functioning autism.  "If you look at the old category of Asperger's, up to 80 per cent of those children will have a significant anxiety disorder by the time they reach adulthood," Dr. Anagnostou says. "Up to 70 per cent will have one major depression as young adults, and 50 per cent will have more than one depressive episode. One in five will have obsessive compulsive disorder. There is significant mental-health co-morbidity for higher-functioning kids, so the term ‘functioning’ becomes tricky."

Dr. Anagnostou says there may be a genetic predisposition to mental-health problems in this group, "but some of it has to do with people realizing and being very aware of their difference and their inability to fit in and their limitations."

This often plays out in the workplace. Dr. Anagnostou notes that many adults with autism who are university grads are unemployed. "If you think about what makes you successful in a job interview, it's not necessarily your IQ, it's your ability to interpret social clues, to be socially savvy. A lot of very high-IQ people with autism fail at those things and so their technical intellectual ability is not translated into functional skill. We don’t have workplaces that will tolerate and accommodate and capitalize on the strengths of people with autism. There are also huge problems with anxiety and depression interfering with someone's ability to maintain a job."

Mental-health issues tend to spike after puberty and worsen after age 18, when supports for students with autism wane, she says. "We make sure our kids who have the ability to do well get supported in high school and we accommodate them. But then we take that away when they get to college. Very few universities have programs for people with autism."

On the other hand, youth with autism and mild intellectual disability often “do very well,” Dr. Anagnostou says. “With supports they can finish school, learn vocational skills, get a job, and they tend to have less mental-health issues than the high-IQ group. They’re often happier. If you have a university degree and end up in a life-long volunteer position, which is what happens to a lot of young adults with autism and high IQs, the kid who had the lower IQ who has the job and can support himself has a better outcome.”

Dr. Anagnostou says a problem in the world of autism treatment—and the larger culture—is an overfocus on academic performance. "I think we need to revisit our outcome measures for early intervention programs. Right now we're reporting on IQ points gained, but IQ doesn't always predict function or quality of life. We need to know childhood predictors of quality of life in adulthood and those should be the targets of our intervention programs. If IQ is one of them, great, but so far IQ hasn't been predictive of quality of life in the autism population."

More attention in the early years should be placed on nurturing emotional regulation, social engagement, shared smiling, and social motivation, Dr. Anagnostou says.

Early detection and treatment of mental-health issues is important. Cognitive behavioural therapy has been shown to significantly reduce anxiety in children with autism. “There are a lot of efforts now to adapt programs,” Dr. Anagnostou says. “For example, the Facing Your Fears program at Holland Bloorview includes more visual information, more practice, less time spent on thinking things and more on doing things. Children spend a lot of time learning how to identify emotions, which is often hard for kids with autism; rating their emotions; and using plans to manage them.”

Another intervention area that gets overlooked is the wellbeing of parents and siblings. "There are high rates of depression and anxiety in parents of children with autism and we know that parental mental-health predicts childhood outcomes, whether you have autism or not,” Dr. Anagnostou says. “The amount of resilience parents have predicts the amount of meaningful support they can give. So some of our intervention needs to go toward maintaining family health—in parents and siblings, and of the family unit."

She also says better systems of support are needed for adults with autism. "You can't have quality of life in adulthood if you don't have systems to support people, if they lose them at age 18."

More study into factors that lead to happiness and life satisfaction in adults with autism are needed, Dr. Anagnostou says. “Smartness is not the only thing that matters in terms of how happy these kids grow up to be, or how meaningful their life is. There are many other things that predict how good a life is. In autism, IQ predicts zip.”

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How the suburbs swayed me

Last year Sue Robins wrote an anonymous BLOOM piece about her son's deteriorating school situation. "I see now that I felt I had to be anonymous because I feared the ramifications of speaking out for our son," she says. "I'm no longer fearful to use my voice to speak up." Here's an update on how things have gone since Sue's family moved 18 months ago to get her son into a more inclusive school. "While no situation is perfect, our crisis in 2012 reminded me to always listen to my gut—sometimes giving up and walking away is the best choice for our children." Thanks Sue! Louise
 
How the suburbs swayed me
By Sue Robins

I arrived in the suburbs kicking and screaming. Our family came in exile from a mature neighbourhood near the university. We had a gorgeous, flat-roofed 1960s home, with a walk-out basement and a wrap-around balcony. The river valley was down the street, and our chocolate Labrador retriever could frolic in the nearby farmland. We were 10 minutes to the hospital, where I worked, and close to the subway. On paper, this was one idyllic place. Except for one thing:  no nearby school would educate our son.

Our youngest son has Down syndrome, and the idea of inclusion and cognitive diversity is still foreign to schools that boast academic excellence, or those staffed with teachers nearing retirement, or the one where the principal told us:

"If I let one special needs in here, they will all want to come here."
Three local community schools would not educate my son because of his differences, offering instead what amounted to a reluctant babysitting service.  I knew in my heart that my boy could learn and excel and grow academically if he was taught in a way that he understood. 

My most strident inclusion friends say that you can make inclusion work anywhere. But after countless meetings with my son’s Grade 3 teacher and principals, and too many times being summoned to the principal’s office to pick up my weeping boy, we knew the little community school wasn’t working. 

For four years, we did everything we could to make it work: I volunteered and my husband sat on Parent Council as Treasurer. But our son's troubles and social isolation never went away. He was labeled a "behavior problem" and written off. One day, I couldn't bring myself to take him to school for another day of misery. I gave up. I pulled him out of that community school and he never went back.

This is where the suburbs entered my line of vision. We happened to be friends with a soccer dad who was the assistant principal in a distant suburban school.  The school was new, and already overflowing with kids. It was in a neighbourhood teeming with young families, about 20 minutes further out from our urban home. We met with the school leadership, who were progressive and enthusiastic about welcoming our son to the school. I felt the smallest flicker of hope. 

There’s always a rub. The new school has closed boundaries. So we had to sell the beloved home we'd lived in for a decade to move neighbourhoods. And that meant moving to the suburbs—very much against my will. The day we moved was bittersweet. We left quietly, and sadly, from a place that had never ever accepted our son.  A community that excludes one is not a community at all.

Reflecting back, I see that acceptance comes slowly. It has taken me a year-and-a-half, but I’ve finally come around to suburban living. Yes, it takes 40 minutes to get downtown, but as a freelance writer, how often do I go downtown, anyhow? I can walk to get my groceries, something I could never do in the old neighbourhood. Independent, boutique stores are popping up amongst the chains in the strip mall—including a bakery, pub, flower shop, kitchen store and Indian restaurant. There is a gorgeous new recreation centre that my son considers his second home. This somehow doesn’t seem too bad. 

The neighbourhood is surprisingly ethnically and socio-economically diverse.  The density out here is higher than it is in the core of the city—with apartments, townhomes and affordable single-family homes being built at a fast pace. I know the "mature neighbourhood" citizens hate us urban-sprawl types. I used to feel that same disdain for suburbanites too. But I like to say that there’s a reason we live here: for some, it is the affordable price for land and housing, and for others, like us, it is because of the quality of the schools.
 
While I lost the status of a more prestigious neighbourhood, and a bigger home, our son gained so much more. We now walk across the street to school every day. He has teachers that believe he can learn, and his reading levels have taken a considerable jump. The leadership team treats our family with respect, and communications from the school are balanced and positive. Our boy still receives few play-date and birthday-party invitations, but in school, he is included and treated with warmth and dignity. Most importantly, he is valued in that school, where he spends seven hours of his day. I’ve seen his confidence rise as the teachers and his assistant nurture his independence, and demonstrate to him that he has worth.
 
And that means a lot more than a big old house in a leafy neighbourhood, doesn’t it? (Yes it does, dear readers. Yes it does). 

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Meet Arthur Fleischmann

Arthur Fleischmann, author of Carly's Voice: Breaking Through Autism, tracks the remarkable journey of his daughter Carly, who has autism and was unreachable till she typed a message on a computer at age 10.

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Our kids in the media

When I walked into Kumon today with my boys, I was thrilled to see a pile of ParentsCanada magazines on the table with a cover photo of this adorable toddler, Hudson.

I looked inside, and was referred to page 8 for more on Hudson. 

There we learn how a photographer suggested him as a model and the editors thought "it would be nice to feature a child with Down syndrome on our November issue."

Why was it necessary to specify that Hudson had Down syndrome? 

It's phenomenal that this little guy is on the cover of the magazine, but why couldn't he be included as simply part of the vast "kid" landscape, which he is, rather than being "identified" as having a syndrome? Why couldn't he just be Hudson, with a descriptor about his personality or what he likes?

Would we expect to see a descriptor of a cover model like this: 

"We thought it would be nice to include an African American child on this issue."

or

"We thought it would be nice to include a child who wears glasses on this issue."

The fact of the matter is that there was no "story" inside about Down syndrome, so that part of his identity was immaterial to the photo description.

How about:

"We thought it would be nice to include a child with their arm in a cast on this issue."

or

"We thought it would be nice to include a child whose mother is an atheist on this issue.

None of this information is relevant to the pic of a gorgeous kid on the front of the magazine.

I think we'll have come a long way when magazines include stand-alone photos of children with disabilities as simply being who they are -- children!

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Who decides what's beautiful?

Carly Fleischmann, a University of Toronto student with autism and a prominent disability advocate, has launched a brilliant Facebook campaign calling for a COVERGIRL model with autism.

Carly is a teenager who was unreachable until she typed a message on a computer at age 10. Her story's been covered widely in mainstream media and she co-authored Carly's Voice: Breaking Through Autism with her dad Arthur.

Now Carly is asking: "Why can't we all be cover girls?"

On its Facebook page, COVERGIRL says it's "an advocate of women rocking their own kind of beautiful."

I'd like to see examples of that in its advertising. 

Carly's campaign is timely because tonight we have New York fashion photographer Rick Guidotti talking about his own quest to redefine beauty at a BLOOM speaker event.

Rick has worked all over the world shooting for companies like L'Oreal, Revlon and Yves Saint Laurent.

But he left that industry to travel the world capturing images of children we don't usually get to see in popular media: those with genetic conditions. 

Children who look different in this way are typically rendered invisible in our culture. You don't see them in mainstream advertising or as part of the parenting magazine landscape.

"In fashion I was always frustrated...because I was always told who I had to photograph," Rick says. "I was always told who was beautiful."

Rick's non-profit Positive Exposure "gives people permission to see beauty and interpret beauty in their own right," he says. "These kids are gorgeous, we're just not allowed to see it."

I love that two trailblazers—Carly and Rick—are asking us to open our eyes to the idea that we choose to see beauty. It's a choice!

And in other news touching on beauty and disability, special-needs bloggers were quick to demand Sephora withdraw a new lipstick its promoting called Celebutard. The Kat Von D lipstick combines the words 'celebrity' and 'retard.' The company says it's pulled the product (although it still appears on the Sephora website).

Enough said.

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Finding time to 'just breathe'

By Kate Wilson

In my mid-20s, my father suffered a serious heart attack. One of the things he was prescribed to help in his recovery and dealing with stress was mindfulness. I didn’t know much about it except that he would make a daily retreat to the basement to lie down and “just breathe.”

It seemed a bit odd and a bit simplistic, but it worked for him so I didn’t question it. I actually didn’t think much about it at all. Until, of course, I needed it.

A few years later I became a mom and things started to fall apart.

For the first 25 years of my life I was the picture of cool, calm and collected. I took things as they came: I didn’t let surprises get me worked up or the bad stuff get me down. I was used to success. Easy-going was all that I knew.

I thought motherhood would follow the same course. It didn’t. From the beginning it was harder than I thought it should be. And the concern that something wasn’t quite right with my son was confirmed when we discovered he had suffered a stroke before birth and was diagnosed with cerebral palsy.

I didn’t handle it well. At all.

I started to unravel. There were days when I felt I couldn’t breathe. The smallest thing would set me off. I was having anxiety and panic attacks. It was scary and I knew I needed to find some way to regain control if I was going to help my son.

This is when I started to look at mindfulness in a serious way and use it to feel better and be a better parent.

Mindfulness is awareness. It is about learning to breathe and be present in our lives, in the here and now. There are no mantras or affirmations. There is no pressure to do it right. It is not some warm and fuzzy fad.

In the simplest of terms, just learning to breathe—and taking the time to do that—did make my life better. It has helped me out of dark and challenging times and continues to help in many areas of my life.

Making time

Part of it is that I take time for myself. Mindfulness was something that I could do in the comfort of my home at a time when I wanted to do it.

We don’t have a budget for me to go to the gym or start a yoga class. I did try those things and it was pressure to get me to go, especially because the best time to go was 4:30 a.m. Then I would feel bad that I hadn’t gone. Counterproductive.

Instead, I got books by mindfulness master Jon Kabat-Zinn and got to work reading. Some of the books are thick and get into the science of mindfulness, but I connected immediately with the concept and practice. Reading case studies of people who’d been helped and understanding the science helped me see its practical use.

I practice mindfulness in two ways. One is a formal practice of mindful meditation, which sees me lying down or sitting for 10- to 45-minutes and focusing on my breathing. I can do this alone or be guided with audio recordings.

The second way I use mindfulness is to integrate it into my everyday activities. I try to be present and aware of myself in the moment.

It may sound easy, but mindfulness takes work and commitment. There are periods when I haven’t taken the time and it shows.

And of course my life still gets stressful and I still have bad days. I do react poorly sometimes, but mindfulness helps me recognize the old reactions and work to change the behaviour.

Mindful parenting

One area of my life where I’ve benefited from integrating mindfulness is in how I parent. Mindful parenting is something that may seem subtle and simple in practice, but its effects can be profound if you’re putting in the work and paying attention.

I picked up Mindful Blessings: The Inner Workings of Mindful Parenting, a book by Kabat-Zinn and his wife Myla. I was skeptical, even after reading Kabat-Zinn’s other work, because I thought it might be too warm and fuzzy for me.

But this core message was there and made sense:

“…mindfulness—cultivated in periods of stillness and during the day in various things I find myself doing—hones as attentive sensitivity to the present moment that helps me keep my heart at least a tiny bit more open and my mind at least a tiny bit clear, so that I have a chance to see my children for who they are, to remember to give them what they need most from me, and to make plenty of room for them to find their own ways to be in the world.”

Awareness

I needed to better understand my son to build a relationship with him. I needed to see how my reactions and behaviours affect him deeply and how my role is to be his guide in the storm.

For example, my son babbles a lot, but has few distinct words because the mechanics of his speech have been affected. It’s hard to communicate when someone can’t use words to express all the things they are feeling and thinking. But with patience and taking more time to pay attention, I’ve learned how to pick up what he’s telling me without words. I saw that he was using the same bodily response to say yes, so we revisited teaching him adapted sign and he was immediately in better spirits because he had tools to talk to us. I get down to his level and have a conversation with him so that we don’t get to the point of frustration. He’s a good listener and understands what I’m asking so I can explain things to him. We have learned so much about communication and how it is possible and quite meaningful without words.

My son can get overstimulated in noisy situations where there are lots of people. By choice, a crowded, rush-hour bus is not part of our lives anymore. But if we find ourselves unexpectedly in a traffic jam, I react calmly to get him to focus and feel safe. I’ve also become very comfortable singing his favourite songs in public, like no one is listening.

Acceptance

I worry a lot less about what others are thinking because I know that their understanding is not mine. Many people don’t know that it’s possible for a child to have a stroke in utero. Their responses to my son can come from not knowing anything about him, or his disability, so I don’t take them personally.

I’m not a bad mother who can’t calm her crying kid down. Many people see a beautiful, happy kid, but some don’t. I used to stare back or get upset. Now I accept it and move on to focus on what is really important in the moment.

My son wears braces, he drools a lot and doesn’t have many words, but he is a kid. He is my kid and I adore his company so I focus on being with him more and worry about what others think less. Besides, his huge smile and wicked sense of fun often soften the hardest stare.

I know that this attitude will be challenged as he gets older and his disability becomes more visible, the gap between him and his peers more apparent. It will be especially hard to lead him to this same understanding as he begins to personally feel the distance, notice the stares and feel the misunderstanding of his disability. But right now I deal with right now. 

I take more time in general to just be in the moment. This is a big piece that mindfulness provides. I used to be so tightly wound because every little thing was on my mind all at the same time. Now, when I’m practising mindfulness, I’ve  trained my brain to focus on what’s going on right now and cut out the clutter of all the other thoughts in my head. Being in the moment has become such a cliché phrase, but what a revelation it is to live it. I can just focus on being with my son, even if that means reading a book about trains 20 times, and not worry about disability forms that need to be submitted or laundry that is piling up.

And I accept the pace of his progress. It can be fast at times and it can be slow, but overall it is more like a marathon than a sprint. My son might walk, but not in a couple of months or with a couple of blocks of therapy. I have come to appreciate and accept that what mobility looks like for my son may not be what it is for most kids. I must be content to work with him at it a bit each day and see the small, but exciting ways that things are coming together.
 

Self-compassion and gratitude

Ultimately mindfulness has allowed me to truly understand that my son is just a kid who’s trying to figure out the world around him and isn’t working with the same experience and information that I have. It’s my job to help him understand this world and his place in it. And to be easier on myself while I’m at it.

“’Perfect’ is simply not relevant, whatever that would mean in regard to parenting,” write the Kabat-Zinns in Everyday Blessings. “What is important is that we be authentic, and that we honor our children and ourselves as best we can, and that our intention be to, at the very least, do no harm.”

It’s also important to see the lessons he teaches me. We often have moments together where he’s able to tell me so much without words. For example, he’ll put his left hand on my face, tilt his head and stare into my eyes with big smiling eyes. This is his look of love. This is one of the ways he tells me he loves me, and I savour it. And he takes each challenge and bit of work as it comes, motivated and content to keep on trying because that is all he knows. And he has a fantastic sense of humour, which reminds me to be more joyful everyday.

Mindfulness is a huge part of my life now and it’s helped me believe that life isn’t always easy, but it is good. I just have to look for the opportunities to enjoy the good stuff.

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Porcupine

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