Tuesday, December 14, 2010

Help Selecting Appropriate Toys for Your Child with Special Needs

At Ableplay, readers will find an independent toy rating system that provides information on toys for children with special needs so parents, special educators, therapists and others can make the best choices for the children in their lives with disabilities. Developed by the National Lekotek Center, the leading nonprofit authority on play for children with disabilities, AblePlay will provide parents, and the professionals who work with them, access to the most useful, product-specific information about the top play and learning products and toys for children with disabilities.

Monday, December 13, 2010

Spectrums: Sexuality and ASDs (Kate Altman, M.S.)

One of the (many) neglected areas in ASD research and literature is the subject of sexuality and adolescence. Topics like puberty, sexuality, and related social development, can be difficult for any teen and their parents, but may be particularly confusing and overwhelming for families with teens on the spectrum. These areas are broad—too broad for a single blog post—but it is important that therapists, parents, and even teachers of teens on the spectrum think about how to handle them.

Homosexuality and bullying have been a (sadly) hot topic in the news in recent months. We know that kids with ASDs are often no stranger to bullying and teasing, but we may not always consider that they are also thinking about and struggling with their sexual identities and feelings. Interestingly, some prominent therapists and theorists who focus on teens with ASDs (such as Tony Attwood) have noted, anecdotally, that teens on the spectrum may be even more likely than “neurotypical” teens to explore and question their sexuality. Teens with ASDs may be less likely to conform than other teens, and so may be more likely to explore and entertain non-heterosexual thoughts, feelings, and activities (there is no research evidence to support this claim, that I am aware of at this time).

One of the risks of such self-exploration is not the exploration itself, but teens with ASDs may not protect themselves enough from their peers. One young man I know who has Asperger’s Syndrome, felt that he was attracted to another young man. Therefore, he immediately changed his Facebook status to “Interested in Men”. His classmates noted the change and started asking him questions and making comments and generally referring to him as gay. Luckily, he was not bullied and did not perceive being teased. But he was surprised and confused when he was unexpectedly thrust into the role of “the gay guy” in school. He had not realized that declaring he was “Interested in Men” on his public Facebook page would pigeonhole him as gay in the eyes of his classmates, and he was not at the stage of his sexual identity development to confidently assert he was gay.

What can therapists/caretakers/parents do to help? We must initiate and keep up a running dialogue with kids with ASDs about sexuality and related issues. These areas can be confusing and awkward for teens, and, even more so, for their parents, but the dialogue is crucial. I have told parents of pre-teens: “It is not impossible that your son still has an obsession with SpongeBob AND confusing, complex feelings about his body and sexuality. In fact, it is likely.” If you need help, don’t be afraid to call for backup: seek guidance from a counselor/therapist or another trusted adult in the teen’s life.

Friday, December 10, 2010

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?

Wednesday, December 8, 2010

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.

Wednesday, November 17, 2010

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?

Wednesday, November 10, 2010

"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.

Saturday, August 7, 2010

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.”

Tuesday, July 6, 2010

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

Thursday, July 1, 2010

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.

Monday, May 10, 2010

"More to life than just therapy" from Robert Naseef, Ph.D.

Get Out, Explore, and Have Fun!, a new book by Lisa Jo Rudy demonstrates that there is more to life than therapy for families of children with a diagnosis on the autism spectrum. True to its title, the author presents us with a treasure chest of ideas for getting out, exploring, and having fun. Families of children with autism, as well as other special needs, struggle to arrive at a place that comes naturally to most “typical” families. This book is a gentle guide for families struggling to find enjoyment in the communities they live and work in.

If there is one word that describes how parents experience life after their child is diagnosed, it is how alone they feel. Generally they jump into learning about the disorder and its therapies and doing all they can to help their child. This is the normal response, but the family becomes entrapped in a lifestyle that is often devoid of fun and engagement that is so vital for healing the hearts broken initially by the diagnosis.

While therapies are vital, lives that revolve almost exclusively around therapy can become virtual prisons. Parents who imagined becoming soccer, or softball, or ballet moms and dads become therapy moms and dads. Lisa Jo Rudy’s passion for inclusive communities comes from a zest for living life fully. With intelligence and insight, she helps the reader understand how real shared interests are fertile common ground for real engagement, interaction, and learning.

Sometimes the simplest principles can be profound, for engagement is central to all of the behavioral, developmental, and educational therapies and approaches to autism and other developmental disorders. Whether a child is verbal or not, there are enough strategies and tips about a variety of interests to get any family started.

In my years of experience personally and professionally, it is finding mutually fun activities that helps to promote the relationships that families crave and deserve. While we might feel powerless in the face of conditions on the autism spectrum, we have tremendous possibilities for meaningful lives and family relationships. This book is a virtual GPS for fun in the community.

Learn more about the book on Lisa Jo Rudy’s blog at http://www.getoutexplore.blogspot.com/

Also read her commentaries on autism at http://autism.about.com/

Wednesday, April 7, 2010

Baby Talk (Kate Altman, M.S.)

While visiting Doug, a 17 year-old guy with an ASD, at his school, his teacher stopped to speak with him for a few moments. She spoke animatedly in a bright, cheerful voice and complimented him on some recent academic successes he had had. When she walked away, the young man turned to me and remarked, “she’s a very nice person, but sometimes she talks to me like I’m a little slow.”

Other adolescents and young adults on the spectrum have told me that some people tend to speak to them like they are much younger, using sing-songy voices and asking questions that you’d more typically ask a younger child. One young man told me he thinks that his gestures are still childlike, which naturally causes people to talk to him like he’s a child, even though he is a senior in college. Doug speaks very slowly with a flat tone, which may be why his teacher addresses him with babytalk, even though he is a bright and mature high schooler.

Adolescents and adults who find that they are "babytalked" by other adults may experience anything from amusement to tolerance to disgust and anger. Communicating that they do not want to be "babytalked" to the babytalker in a respectful way can be challenging and daunting, especially because they babytalker is usually a well-intentioned person. This subtle and complicated dilemma provides insight into the challenges of being a self-advocate in everyday life.

What are your experiences with babytalk, and how do you, or your child, handle it?

Monday, April 5, 2010

Every time the phone rings…I jump from Robert Naseef, Ph.D.

“It seems like every time the phone rings I jump.” Not a week goes by without a parent of a child with a disability echoing these words in my office. Is it a phone call from a child’s school asking that the child be picked up early because of a meltdown? Could it be another injury on the playground or in the classroom? Or has my child had another seizure? Otherwise, is a teacher reporting that many assignments have not been completed? All possibilities to be sure, but maybe it’s not bad news after all.

Let’s take a breath and look at the traumatic emotional impact of a child’s disability upon the family. Trauma (in the DSM-IV) is the personal experience that involves threat to one’s physical integrity. Trauma can also be caused by witnessing such an event, or by learning about an event that has happened to a family member. While most disabilities are not life threatening, having such a child often produces the same symptoms in families. Although traumatic stress related to developmental disabilities is only recently appearing in the professional literature, this concept can provide a lens for understanding what families go through.

A “bad day” is often lurking in the shadows. For example, if a child has a tantrum in the supermarket that attracts attention, or bolts across the street without looking, a parent or sibling may react intensely—triggering palpitations, shortness of breath, dizziness, and even flashbacks to other even more stressful incidents with the child.

Family members may experience nightmares and disturbed sleep, as well as a sense of despair. They may spend long periods of time on edge and behave irritably with each other as a result. But families are resilient and with support and effective intervention, some sense of order and predictability can be restored to the family members’ lives, and thus the overpowering sense of helplessness and powerlessness can be alleviated. Parents and siblings may need to help themselves to learn how to regulate their emotions during these periods.

Families go on courageously to find meaning in their struggle and love for their child and life itself. Although families cannot control what happens, we do have a lot to say about how we handle things. So if you jump the next time the phone rings, remember that’s a normal reaction for people who have been traumatized. You have handled things up until now and you can manage this one. Take a breath, and recognize your fear is about what may have happened. Take another breath and meet the moment that is happening—maybe it’s just a friend calling to say hi.

We invite you to let others hear about your experiences.

Tuesday, March 9, 2010

Advantages of Being Different: A Commentary from Robert Naseef, Ph.D.

Sam and his grandpop are quite a pair—each remarkable--Sam with autism and Dan with quadriplegia. In The Wisdom of Sam: Observations on Life from an Uncommon Child, Dan Gottlieb, Ph.D. writes with simplicity, gentleness, and keen insight about their relationship, the human condition, and what he learns from his grandson.

So much is “normal” about them. Until you imagine Dan in his motorized wheelchair or read about how Sam doesn’t know how to join in a conversation with other kids his age, or is asked to leave his mother, or is confronted by a change in the day’s routine. Such is life with autism, but as this grandfather points out the limitations don’t matter for “We are who we are.”

Because of his autism, Sam often notices things about the world around him more clearly than his parents or his grandfather. It could be a texture or a color or the words used in a particular situation—something others have missed in hurrying around. As we read about Sam’s observations, we become enlightened to some advantages of autism. Dan reminds us through Sam’s observations of the simple truths and passions we once knew as children.

When my son’s autism began almost 30 years ago, I tried single-mindedly to change him. After 7 years, I realized that he had changed me. Likewise Sam’s perspective through his different kind of mind makes him a remarkable teacher to his grandfather and readers from all walks of life.

I met Dr. Dan Gottlieb in 1997, when he interviewed me on his radio show Voices in the Family on WHYY-FM about my book, Special Children, Challenged Parents. He was genuinely interested in asking me what it was like to have a child with autism who had lost his speech. He looked in my eyes, and I knew then that he was not afraid to hear the real answer. Words stuck in my throat, my eyes filled up. He went to a station break, asked if I was ok and told me he wanted listeners to hear my story.

Having been close friends and colleagues ever since, I am hardly an objective reviewer. However I can tell you with certitude from over 25 years of listening to other families of children with autism, that many have experiences of profound insight and learning from their children. These are precious autism moments that reward parents’ love and devotion.

The Wisdom of Sam elevates these moments with dignity, grace, and profound meaning. This is a book I will pick up over and over to take me back to the passions of childhood and that wisdom inside. Don’t miss it.

Check out the trailer on YOUTUBE. http://www.youtube.com/watch?v=_V4QrekU1Wk

Release date 4/1/2010. Orders can be made now on Amazon.

Tuesday, February 16, 2010

Autism, Science and Recovery: No Simple Answers

by Cindy N Ariel, Ph.D.
and Robert A. Naseef, Ph.D.

Frequently we are asked, “What side are you on?” referring to the debate about vaccines and autism and the recent retraction of Wakefield’s article by the medical journal Lancet in Great Britain? Certainly parents have become passionate on this issue. The discussion is complex and there are no simple answers, but there is unmistakable progress in theory and research.

In recent years, responding to political pressure from the autism community, funding has dramatically increased, and scientific research has picked up its pace. Autism Speaks recently reported the Top 10 Research Studies in 2009 from epidemiology, early intervention, genetics, biology, language acquisition, etc. You can read summaries of this research and get the original sources at: http://www.autismspeaks.org/science/science_news/top_ten_autism_research_events_2009_prevalence.php

Also, in the current issue of The Autism Advocate, Martha Herbert, M.D., Ph.D. and Donna Ferullo contribute an engaging article, “Autism and the Environment: Is there a link?” The authors hypothesize that the rapid rise in diagnoses of autism and other conditions challenges the model of autism as an incurable genetic disorder. The concept of incurable does not capture the phenomena of how dramatically some individuals improve. The new model sees autism as a whole-body condition with complex genetic vulnerabilities and numerous environmental triggers. The Autism Society of America offers a free online course, “Autism and the Environment 101” by these same authors on the society’s web page at http://www.autism-society.org/site/PageServer?pagename=RESEARCH_ENVIROHEALTH_101

As Roy pointed out in the discussion on our Facebook Wall, “As far as I know a person with ASD does not become 'cured'. Yes, many get better (thankfully) but ASD and 'cured' seems to be an oxymoron. I have an ASD daughter and a nephew severely impacted by ASD.” In our 25 years of professional and personal experience, we see families struggling to get past the shock and the turmoil of the initial diagnosis and get the needed services for their children.

As current scientific data confirms, there is no single known cause or cure, but autism is treatable. The children and their families progress--some by leaps and bounds, some slowly, and some barely if at all. Such is the mystery of the spectrum we have come to know as autism. Such is the process of coming to terms with what is changeable and what is not, and which varies for each individual and family. This is how we think of recovery from autism. We have not seen children cured of autism, but we have seen them outgrow many symptoms. Early diagnosis and intervention has been found to be extremely important in developmental progress.

The need for state of the art services for the 1 in 91 children and their families who have been impacted by autism is urgent. Alarmingly, a two year old child just diagnosed with autism gets only a few hours of home based services per week, while experts on the National Research Council (http://www.nap.edu/openbook.php?isbn=0309072697 ) recommend that “services should include a minimum of 25 hours a week, 12 months a year, in which the child is engaged in systematically planned, and developmentally appropriate educational activity toward identified objectives.” (Executive Summary, p.6)
Parents shouldn’t have to beg and scream for these services. Many schools are poorly funded, especially in the inner cities and rural areas. Staff is often inadequately trained, and there are too few opportunities for developing social skills by including children with autism with their same aged peers.
It is heartening to have autism awareness in public focus. With the right services and supports, many people with autism can live meaningful lives within their families and communities.

Let’s do our best as a society to provide help and to find solutions--before it’s too late—for our children and grandchildren.

Monday, February 1, 2010

Letting Go of Anger

Recently a woman at a workshop on coping with the stresses of raising a child with autism, shared that, “Once I let go of my anger, I had a whole new life.” She told her story. Several weeks before her baby was due, she was rear-ended in her car and taken to the hospital. When she went into labor a few days later, she thought this was caused by the driver of the car which struck her. When her child was diagnosed with autism a few years later, she angrily blamed that driver. She stated that she needed someone to blame. This went on for several years. She told people that when she let go of her anger, she started to really enjoy her child and her life. She had been miserable staying angry.

From Robert Naseef:

Anger is often about a perceived sense of injustice. Next time you feel your anger brewing, check your thoughts. See if you are thinking that you have been wronged, or slighted, or mistreated in some way. Remember that just because we think something doesn’t make it true. But the more we think about it, the more true it may seem.

Everyone doesn’t have a child with autism or other special needs, so there is a deep sense of alienation or not belonging. Anger is complicated. It comes and goes in the normal emotional flow of our lives. Often, if we look deeper, we are feeling tender or hurt. There may be thoughts of "Why me? Why did this have to happen to me?" Losing something precious hurts. Parents want and even temporarily need someone or something to blame. It might be themselves, each other, the doctor, vaccines, etc.

Anger may energize us to fight for justice, for what is fair and human, such as the services our child desperately needs. It can inspire change that needs to happen or it can eat us up inside. The journey to let go involves coming to grips with the issue of what we can and must change and what we cannot change and therefore must be willing to live peacefully with. This can take years to come to grips with.

Handling anger well is a skill involving emotional intelligence. In Emotional Intelligence, Daniel Goleman quotes no less an authority than the philosopher Aristotle, “Anyone can become angry—that is easy. But to be angry with the right person, to the right degree, at the right time, for the right purpose, and in the right way—this is not easy.”

While it is crucial to be open and honest about our feelings and have a life story that makes sense, we can get stuck in that story. When that happens, we just rehearse the anger and suffer because things are different from what we expected and wanted.

When she was able to let go of her anger, the woman mentioned above began enjoying the progress her son is making and enjoying her daily life with him and the family she loves. Letting go and embracing life—gently.

From Cindy Ariel:

Anger is a normal, healthy emotion. We often do not learn positive ways to deal with our anger and so it is often viewed as negative. In truth, there is no negative emotion. While anger can be scarier than other emotions because it can bring out aggressive thoughts and intense physical feelings, all emotions, anger included, are important and positive in that they help us to handle our lives in different ways.

Too much anger for too long can affect our health and the quality of our lives. For example, unexpressed anger can lead to behavior that is passive aggressive, anger turned inward may result in depression, and anger’s physiological effects can affect our bodies in the longer term leading to such problems as hypertension and chronic pain. Once we get through our anger about any given event or situation, we are bound to feel better because we no longer feel the sometimes uncontrollable feelings of aggression and the physiological distress that anger often provides.

The problem with an anger inducing scenario like the one above is that while most of us would have been similarly angry with the person we thought was to blame, holding on to this type of anger without expressing it assertively and/or constructively will not lead to a positive outcome; it will fester and infect our energy and perspective. We can let go of anger when we are able to express it in an assertive and constructive manner rather than an aggressive and destructive one. If, as in this situation, a direct expression of the anger would still not fix anything or make the anger go away then it's necessary to channel the anger into more productive action such as advocating for the child to get all that he deserves.

When people are angry, they describe all kinds of side effects. In addition to depressed or aggressive thoughts these may include: headaches, tightness in the chest, shakiness, muscle tension, difficulty swallowing, etc. It's important to deal with these physiological effects by learning ways to calm our inner emotional selves. People do this in all kinds of ways such as through meditation, breathing and relaxation techniques, art, walking, or journaling to name a few. No wonder that when we are finally able to resolve and let go of festering anger we feel so much better and can get on with the rest of our lives.

This is how we help people in our psychology practice. When people have trouble letting go of anger, it is wise to consult a mental health professional.

Tuesday, January 19, 2010

Empathy and Autism (by Kate Altman, M.S.)

From time to time, parents will tell us that they do not believe their child really has autism, despite having all of the symptoms, because they do not “lack empathy.” Like these parents, I have also read literature that makes this assumption: that people with autism have little or no empathy for others. This assumption puzzles me. “Lack of empathy” is not a diagnostic criterion in the Diagnostic and Statistical Manual for Autistic Disorder, Pervasive Developmental Disorder, or Asperger’s Disorder. Similarly, the most seminal and thoughtful research and literature on ASDs (Uta Frith, Lorna Wing, Simon Baron-Cohen, etc.) does not assert that individuals with ASDs lack empathy.

I have asked individuals with ASDs about empathy, and they have described to me feeling extremely empathetic at times; in fact, several of these individuals have mentioned that they feel “too sensitive” towards others. One young man on the spectrum noted that when he sees someone experience something negative, such as falling down and hurting themselves, he winces as he literally “feels their pain.” However, he noted, his empathy is only evoked when he, at some point, has experienced the same situation or same evident emotion as the person with whom he is empathizing. If someone is experiencing something he cannot relate to or understand from his own past experience, he does not “know to empathize” and then may appear insensitive.

This young man’s insight leads me to believe that many people misunderstand (Simon Baron-Cohen’s) “theory of mind” deficiencies in people with autism as a lack of empathy. “Theory of mind”, or ToM, is the theory that we have the capability to attribute mental states to ourselves and to others (or, as the saying goes, to put ourselves in another’s shoes). Theory of mind ability constitutes the first step in empathy. While people with ASDs may struggle with theory of mind ability (probably due to a lower-than-usual amount of mirror neurons in the brain, which facilitate ToM), they do possess at least some of this ability, and studies have shown that they can and do develop ToM abilities over time (in fact, studies show that many individuals with Asperger’s develop ToM abilities nearly on par with most neurotypical adults by adulthood). Therefore, a person with an ASD (especially as a child) may struggle to understand someone else's mental state, but once they do, they can certainly feel for that person.

Literature that suggests that individuals with ASDs lack empathy is not only incorrect, it is dangerous, because it may lead to the belief the people with autism are sociopathic and not safe to have around. Furthermore, it is simply untrue and undercuts the incredible sensitivity towards others that many people with ASDs possess. Over the last couple of months, I have been conducting research with young adults with ASDs in college, and, as a college professor, I can confidently assert that this group of students have been among the most thoughtful, and empathetic, that I have met.

Wednesday, January 6, 2010

Is it ok to grieve again?

Since our last blog about handling the holidays, we have heard from many readers. Some were doing well and enjoying time with their children, others experienced sadness and some told us about mixed feelings of joy and sorrow. One reader asked us if it was ok to grieve again. No one asked if it was ok to be happy.

Since the question about continued grieving comes up frequently, we are taking it up here, and we welcome readers to share their thoughts and experiences on our blog or Facebook wall, or just respond by email to therapist@alternativechoices.com.
Answer: From Dr. Cindy Ariel:

The sadness left by grief never goes away. At any moment, I am able to look into my grief spots and feel the sadness and emptiness left there by significant losses. Losing the child of our dreams can certainly be one such loss.

There are many losses through life, and seen in a larger perspective, each loss adds meaning and depth to our lives. We all feel grief at various points in our lives but that does not minimize our times of happiness and joy. In fact, grief magnifies joy because happiness is so much sweeter after experiencing sadness.

One strategy is to do extra things that make us joyful so that the happiness in our lives balances or hopefully even outweighs the sorrow. It does not make the sorrow go away but it surrounds it with a cushion of good feelings and makes it easier to manage.

As we come to accept where our children are actually at and who they really are, we dream new dreams for them and for our families and these new dreams are much more likely to be based upon reality and therefore are more likely to be attainable.

When we once dreamed about having philosophical discussions with our child, we may now simply long to hear them call us mommy or daddy or say I love you…just once. Our dreams may involve easing up on hearing our child talk and focusing instead on just having her look into our eyes and smile. When such new goals are reached, it is joyful indeed. This is not to say that sometimes we don’t still wish or long for that once dreamed of discussion. When we focus there, we may always feel sadness that those discussions may never take place.

Dreaming new dreams and rejoicing in new goals helps us feel happier in this new moment with the child we actually have. Nobody wants any hardship to befall their children. We may feel disappointment, guilt, and sadness when our child has a challenge that will make life, which is already difficult, even more so. We get through the adversity and we love our children even as we grieve and we celebrate their unique lives and the time we are given to be together.

From Dr. Robert Naseef:

Grief may come and take you places you never expected to go. This is a normal and natural. It comes and goes. First of all realize that you are not alone when your heart aches. So go ahead and look at your grief. Observe your thoughts and feelings. Notice any sensations in your body. Accept them and be kind to yourself about having them. It doesn’t help to pretend to be positive when underneath you may be lonely, afraid, or sad. I have learned through my son’s 30 years that you don’t have to lie to yourself. You can grieve. You can complain. You can mourn. This helps you to go on, make the best of the situation, and enjoy life.

It is natural to wonder about what might have been especially around the holidays. Your longing for the child of your dreams or a typical life for you and your family may endure. You have to learn to live with that yearning, and you can do that, but you don’t have to lie to yourself about how hard this can be. As Kahlil Gibran reminds us, “joy and sorrow are inseparable . . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed.”

Secondly, try to accept yourself as you are—a kind and loving parent doing your best with your child who is undoubtedly doing his or her best under trying conditions. A perfectly lovely child with special needs can be very hard to be with because of their behavioral, social, or communication issues. When you love somebody, you love to be with them. When you don’t feel that and think you should, the guilt comes up, and your heart aches. As you can accept yourself in a kind and compassionate way, your heart heals, and then the grief lightens. Acceptance can bring change.

Finally, accepting our pain and ourselves leads to accepting and enjoying our child and our family. This is the gateway to love and happiness. That deep connection that a parent feels with a newborn, or a child’s first steps, or first words can be felt at any moment when we are truly aware and attuned to our child. That deep connection is alive inside you. As you rekindle it, you can actually experience very deep happiness. Let us hear from you about your experiences.