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.