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.

"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/

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?

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.

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.

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.