Imagine: An Alternative Dimension (Cindy N. Ariel, Ph.D.)

I was reading John M. Ortiz's book, The Myriad Gifts of Asperger's Syndrome (2008) and enjoyed his idea of imagining an alternative dimension where: "everyone follows traffic rules; salespeople are honest; telemarketers only call based on personal requests; news is based on actual facts; politicians follow through on their stated promises; no contracts have 'small print' (this is no longer needed, since every detail is fully spelled out in plain, clear language); airline flights are never overbooked; warranties specify unambiguous facts and are consistently upheld along with their product's patent guarantees; businesses follow through on their promises and responsibilities; repair persons arrive at your home on time as scheduled; people say exactly what they think/feel without playing mind games...Workers do not call in sick unless their ill health warrants it, and do not cheat or lie to gain unfair advantages, sabotage their coworkers, or even as much as take another person's parking spot...the food we consume and the environment we live in would not be littered or contaminated with toxic chemicals and refuse because the highly sensitive people inhabiting it would be well aware of the harms of toxicity..." (pages 9-11).

Well, you get the idea. Reminds me of John Lennon (Imagine!). Also, reminds me to check my own perspective. Sometimes we do things automatically, without question, when another perspective exposes faulty logic, negative consequences, or maybe just a different way of doing things. It's why we need neurodiversity. What would we do without people who challenge our ways of thinking and offer clearer ideas and solutions?

Sensory Perspectives (by Kate Altman, M.S.)

Yesterday while I was driving around, running errands, I heard a short piece on NPR about a 73 year-old artist. She's a painter and sculpture known for working in vivid colors and textures. And she is blind and deaf. As she described how she "sees" the world (not in darkness, as people often assume, but a constant swirl of colors and images), I reflected on what it must be like to go through this life with a very different perspective from my own.

One of the wonderful things about working as a therapist is that I get at least a taste for what the world looks like, feels like, smells like, and so on, from my patients. I particularly love working with people on the spectrum, whose sensory experiences are often so different from my own. I realize that such sensory issues can often be uncomfortable and problematic, especially with children, but they can also be exciting and interesting. I always think about a boy I observed in his classroom while I was working with another child. His teachers often expressed sadness for the boy, who was nonverbal and did not appear particularly connected to the other children. But as I would watch him stroke the bumpy cinderblock walls of his classroom, raptly gaze at sunlight streaming through a window, run his fingertips over the smooth faux wood of his desktop, I could easily imagine that he was content and even constantly intrigued by the mundane classroom that no one else much noticed. Of course, I have no right to make any assumptions about what this boy was thinking or feeling, but the serene look on his face made me wish I could, at least for a moment, experience the world through his perspective. These days, we often talk about "mindfulness" as a way to manage stress and anxiety and increase our enjoyment of life. I would venture to guess that this boy lived in a naturally mindful state full of rich sensory experiences that many of us diminish or ignore. His life certainly is not easy and we can only speculate about what he thinks, but, like the blind and deaf artist, he experiences our world in a special and powerful way.

Adolescence and ASDs: Focusing on the Positive (by Kate Altman, M.S.)

Last week I gave a presentation on autism and adolescence. Since it is a broad topic, I talked about a lot of different areas, including puberty, growth spurts, sexuality and sexual identity, peer pressure, fitting in, and so on. Unfortunately, a lot of these areas seem to be cause for struggle and adversity for teens on the spectrum (as they can be for all teens). Adolescence is a confusing time full of change, which can be particularly distressing to teens with ASDs who may feel especially confused by unspoken changes in social rules, which rapidly become increasingly complex.

Since we focused so much on challenges throughout the presentation, I concluded by asking the audience, which included parents and therapists, what they thought might be the benefits of being a teen with an ASD. At first everyone seemed stumped, but then they started to brainstorm some possible benefits. For example: 1.) Teens on the spectrum often have a special interest which can be a source of passion and provide an escape from the “real world” of high school; 2.) Many teens with ASDs (though, of course, not all) truly do not seem to feel as pressured to conform as other teens, and so are able to maintain their identities and senses of self; 3.) Teens with ASDs can be more open-minded and less judgmental than other teens, so they can get to know a variety of people, often of all ages, and so aren’t so limited in their friendships.

Of course, the items we brainstormed are generalizations based on observations and speculation. Our list may not apply to all teens on the spectrum, but I think it is always a good exercise to focus on the positive aspects of a certain experience. Sure, adolescence can be rough, but it can also be a time of great self-discovery, growth, and exploration.

What are your thoughts on the positive aspects of being a teen on the spectrum?

"The Social Network" and Asperger’s Syndrome by Cindy N. Ariel, Ph.D.

Did anyone else who saw The Social Network notice that the character of Mark Zuckerberg, played by Jesse Eisenberg looks like a classic example of someone with Asperger’s syndrome? The Social Network is a recently released movie about the development and growth of Facebook and centers on a couple of huge lawsuits brought against the main founder, Mark Zuckerberg. It seems that Zuckerberg has made a lot of enemies in growing his social network site.

Researching a little on the internet, I found a good deal of controversy over whether Zuckerberg has AS or not. Many doubters have heated words to say about the possibility of him having Asperger’s syndrome. They see him as being fully conscious and calculating in the degree of human damage he caused. He is clearly viewed by many as a disloyal, cold blooded businessman.

But the guy who plays him in the movie probably displays enough symptoms to meet official diagnostic criteria for Asperger’s syndrome. He has a clear obsessive special interest and difficulty focusing on one subject unless it includes that interest (computer programming). He speaks rapidly, and demonstrates odd behavior at times. Socially, his interactions with his closest friend primarily involve his special interest and he doesn’t participate in the parties and celebrations going on around him even to mark major milestones in the growth and progress of his company. Earlier, he seems totally clueless about his own behavior when his girlfriend breaks up with him. His literal honesty during a legal deposition when asked whether he is giving opposing counsel his undivided attention and his self-involved alienation at college also resembles other adults with Asperger’s syndrome. It’s interesting that the guy portraying the developer of the largest social network in the world appears socially inept.

I do not know the real Mark Zuckerberg, and from what I understand, neither the director of this movie nor the actor who played him does either. Besides, whether the real Mark Zuckerberg has AS or not is his own private matter. The point that strikes me as important though is that if you assume that the character in the movie has Asperger’s syndrome, his actions and behavior come across much differently than if you go by the assumption that this guy is an avaricious capitalist. In the lives of Facebook or Mark Zuckerberg, none of us may be affected or really care. But in the lives of the people we care about, especially those with Asperger’s syndrome, perspective can make all the difference.

80 Percent Autism Divorce Rate Debunked in First-Of-Its Kind Scientific Study

Press Release: Kennedy Krieger researchers find autism does not affect family structure

Having a child with autism can put stress on the parents’ marriage, and a frequently cited statistic leads to a common perception that the divorce rate among these families is as high as 80 percent. But a study by researchers from Kennedy Krieger Institute in Baltimore found that a child’s autism has no effect on the family structure.

Brian Freedman, PhD, lead author of the study and clinical director of the Center for Autism and Related Disorders at Kennedy Krieger Institute, said the findings seem to debunk a lot of the general understanding about high divorce rates among parents of children with autism. Dr. Freedman and his research team found that 64 percent of children with an autism spectrum disorder (ASD) belong to a family with two married biological or adoptive parents, compared with 65 percent of children who do not have an ASD.

Dr. Freedman will present results of the study in Philadelphia at the International Meeting for Autism Research, an annual scientific meeting convened to exchange new scientific progress among autism researchers from around the world.

Receiving the news of a child’s autism diagnosis can be devastating, and Dr. Freedman said the pain is compounded as parents ponder what will happen to them as a couple. “In the work I’ve done with children with autism, I’ve come across many couples who quote this 80 percent divorce rate to me. They don’t know what the future holds for their child, and feel a sense of hopelessness about the future of their marriage as well — almost like getting a diagnosis of autism and a diagnosis of divorce at the same time,” he said.

With very little empirical and no epidemiological research addressing the issue of separation and divorce among parents of children with autism, researchers sought to more scientifically examine the incidence. Using data from the 2007 National Survey of Children’s Health^[1] , they examined a nationally representative sample of 77,911 children, ages 3 to 17.

Previous research speaks to the fact that parenting a child with autism is stressful, and it puts pressure on the marriage. Dr. Freedman noted that past studies have found couples with a child with autism experience more stress in their marriage than couples with typically developing children or couples with children with other types of developmental disabilities, such as Down syndrome. Mothers of children with autism report more depression than those with typically developing children, while fathers report they deal with the stress by distancing themselves and becoming less involved with the family.

“While there are indeed stressors in parenting a child with autism, it doesn’t necessarily result in the family breaking up more often than would occur in another family,” said Dr. Freedman. “And as someone who works with a team of health care professionals to treat and provide support for families of children with autism, it’s important for us to make sure our patients’ parents know that, and for our fellow clinicians to provide reliable, evidence-based information about the divorce rate among this population as well.”

This analysis of the National Survey of Children’s Health data showed there are certain factors in a family that can contribute to divorce, such as having a child with particularly challenging behaviors, with or without autism. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point. Further research is needed to understand the relationships among in-tact families with children with autism to identify how they work through the challenges.

“I would hope this research drives home the importance of providing support to these families, and letting them know that their relationships can survive these stressors,” he said. “We should continue to provide training for parents so that they can work through the stressors in their relationship to keep their family together and have a successful marriage.”

Autism, Adolescence, and Sexuality (by Kate Altman, M.S.)

The other day I had the privilege of speaking with two groups of parents at the Center for Autism. The topic? Autism, Adolescence, and Sexuality. Talking with a preteen or teen about topics like puberty, sexual feelings, masturbation, the opposite sex (or same sex, depending on your child’s sexuality) and so on, is never easy or comfortable for parents. Talking with a preteen or teen on the spectrum about these issues may be especially daunting and confusing.

Here are a few tips that I shared with the parents:

-Have the talk early and often. Even if your ten-year-old still spends most of his or her time talking about Sponge Bob, his or her body may already be changing…and he or she is probably noticing. You don’t want your child to feel confused and frightened by physical changes they aren’t prepared for and don’t understand (plus, no one ever said you can’t be into Sponge Bob and have age-appropriate sexual feelings). Also, make sure you speak with your child often about puberty and sexuality, and always invite them to ask any questions they might have. One conversation will not be nearly enough.

-When you talk with your child, use clear, concrete language and appropriate terminology (though you should teach them the slang too, so they will understand what their peers are talking about).

-Use visual aids. Don’t go in solo! There are wonderful books out there that you can read to or with your child to jumpstart the conversation. What’s Happening to Me?* by Peter Mayle and Arthur Robins is a good one with fun illustrations and understandable language.

-Teach your child the unwritten social rules around sexual behaviors. Becoming a sexual person introduces the need for a whole new set of social rules (for example, masturbating in private at home is okay; masturbating in public is not). Your child will become a sexual person, so it is important for you to help him or her learn to experience and express their sexuality appropriately. For helpful resources on approaching these issues, check out Isabelle Henault’s book, Asperger’s Syndrome and Sexuality* (despite the title, most of the information is helpful for all adolescents on the spectrum, not just those with Asperger’s Syndrome).

Looking for more information on this challenging and complex topic? Contact me at kate_altman@yahoo.com or (215) 592-1333 x 5.

*Both of these books are available on Amazon.com

Reflections on Father’s Day 2010 by Robert Naseef, Ph.D.

On Father’s Day 2010 I thought about my father, and I thought about my children. I also thought about the fathers I know—my brothers, my cousins, my friends, and the fathers who have children with special needs who seek my counsel. We have both different and common ground. We learn about being a father from our own fathers and from our children.

I remembered the poem by e.e. cummings about his father which I read at my dad’s funeral in 2000:

My father was a

true father‑‑he loved me.

And because he loved me,

I loved him: first,

as a child, with the love

which is worship:

then as a youth, with the

love that gives battle;

last, as a man, with the love

which understands.

It says a lot about my relationship with my father. As a little boy I adored him, and couldn’t wait until he got home at night. As a teenager, I battled him. Years after becoming a father myself, I finally learned to understand him.

In the groups I facilitate, there are men whose circumstances have inspired them to open up discussing what it’s like to be a father of a child with special needs. Their children are very different from their expectations. In groups they have the opportunity to experience that their difficulties are “normal.” They feel acceptance from other men when they open up, share their pain, and grieve lost dreams. Here are some of their stories:

“If my dad gave up on me, I’d be the school janitor. I was mad at the world. My dad helped me to find my passion, and helped me to overcome my obstacles.” This came from Frank who has a learning disability himself and a son with a disability. Today he is a successful executive. “When my son was first diagnosed, I thought he might never make janitor. Now 10 years later, he is doing well, and it looks like he can go to college (with a support program). I took a lesson from my own father about how to believe in him.”

But the feelings and the outcomes vary. “They tell me it’s hard to be the father of a typical kid. I wouldn’t know.” This came from Larry who has a son with Asperger’s disorder. He feels depressed now that school is out, and his son cannot go out and play with the other children in the neighborhood for he does not know how to interact. Other dads have let go of college and hope that their children can just do meaningful work of any kind.

Jeff has two children with autism. “You can’t fix it, so you learn to live with it. My wife feels like she is to blame, and I haven’t been able to help her get over that. We try to give each other hope, but it’s hard. She says I don’t smile enough. I’m not sure I can remember the last time I smiled. I love my boys so much. I just want to smile more.”

It’s a delicate balance of hope and reality—accepting the bad news about a child’s condition and working for the best. Men also struggle with their anger. “My fuse is much shorter now,” according to Sal, “I’ve just got to deal with my anger better and be nicer to my wife and children.”

Kyle, the father of a child with a seizure disorder, told me that his son has brought out the best and the worst in him. On one hand, his son has taught him patience and understanding. On the other hand, he has come to realize and admit that sometimes the pain of watching his seizures is just too much. He doesn’t always want to spend time with his son. It’s the honest truth- the sad and the sweet.

In my life, my son with autism never got his speech back. As I wrote to Tariq, "I have tried so hard to change you, and in the end it was you who changed me. Instead of becoming the son I wanted you to be you made me become the man I needed to be.” Simply put, I matured.

It took years to learn to be with him just as he is, not as I wanted him to be. We couldn’t play baseball or build model airplanes together as my father did with me. I can’t have philosophical conversations with him as a young man. Still he is a good son to me. Just taking a walk in the woods can be fun and relaxing for both of us. I couldn’t change the autism, but I did learn to appreciate the relationship we do have without words.

Here’s a few of the lessons other fathers have shared with me:

· I have a different relationship with work. It’s not my whole life anymore.

· My daughter with Down syndrome has taught me to appreciate life in a profound way.

· I have learned to see past what my son isn’t and focus on who he is.

· My children’s smiles are my smiles—they light up my life.

· My father was a hard worker and he taught me to be. I work hard to be the best father I can be for my child with special needs.

· My father had a horrible temper. I was determined to do better. My daughter’s disability taught me humility as I learned to accept what I could not change without bitterness.

· I am a fixer, and I can’t fix this. There is no wrench to pull out of my toolbox. I have learned to just be there for my family.

I like to spend Fathers Day with my children doing things we like to do together like boating or bicycling. I just enjoy that they like spending time with me. As a teenager, I would not have chosen to spend a whole day with my father—nor would he have been available for it. Not too many fathers were in the 1960’s. He did coach my little league team and came to my track meets in an era when a father’s presence at those events was rare. He would never say he was proud of me, but he was.

In remembering my father and the fathers I know, it’s clear to me that we start out imitating or trying to improve on our own fathers. Then we learn to apply those lessons to our own children according to their individual wants, needs, and abilities. I make sure to tell them that I love them and am proud of them—just as they are.