AAAAAHHHHHH (Cindy N. Ariel, Ph.D.)

This was the main vocalization offered by my stepson Tariq for many years. He still often vocalizes in this way and we sometimes affectionately joke that Tariq has AAAAHHHHHtism, or that he is AAAAHHHHHtistic.

As long as we’ve worked with people on the autism spectrum there have been people who have a hard time with 'the A word.'

Then there’s the more recent problem of how to refer to someone diagnosed with autism.

Are they autistic? Many people, including many autistic people feel strongly that they are. Today I heard Ari Ne’eman speak about this. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN) and was appointed to the National Council on Disability by President Obama in 2009. In Ari's view, he is not someone with Judaism or someone with an American background or someone with male genitalia; he’s a Jewish American guy. In fact, he’s an autistic Jewish American guy. And he’s a lucky one because he embraces all of these special aspects of himself.

Or, are they a person with autism? There are many people who feel strongly that autism does not define a person. Just as we don’t call someone a heart diseased individual, or a broken armed man they say we shouldn’t define someone as an autistic person, but rather a person with autism. A person should not be defined by diagnosis or disability; they are a person first, and they happen to have autism.

When the person-first movement began, I was criticized when I wrote something that was not in person-first language. I spent years rewriting and rethinking so that I write and speak in “person-first” language. But Ari’s point is well taken too. Autism, especially for high functioning individuals is not something scary or negative; it’s a way of being with a lot of cool advantages.

I do fear that this issue can be divisive in the community. We can refer to someone as blonde or as a person with blonde hair. A near-sighted person is also a person who wears glasses; a clinically depressed person has depression. These are just facts. If you are proud of your autism and define yourself or your child that way – that’s great for you. I wish it could be that way for everyone.

But I can’t judge you if you or someone you love are heavily impacted or impaired by autism and you have difficulty embracing it. Perhaps it acts as more of a disability for you in your life - is it wrong to not want to be defined by the diagnosis that inhibits you? Or to have your child defined in this way? In our family, we sometimes say that Tariq is autistic, sometimes that he has autism, and sometimes he’s AAAAHHHHtistic or has AAAAHHHHHtism. None of this speaks to our feelings for him or our wishes for his opportunities and happiness.

Anger and Other Feelings by Robert Naseef, Ph.D.

“I am just so angry.” With his voice shaking, he said what other men in the circle were thinking and feeling. “When I get home and approach my son, he pushes me away. I can’t stand it anymore. He just wants his mother, and he pushes me away from her too. The other day I told my wife I am ready to sign my parental rights away.”

Alex loves his son, but it’s the autism this man hates and the way it makes connecting seem impossible. The occasion for this fathers (and male therapists) group meeting on April 15 was the opening of the Autism Resource Center by the Ontario Arc in Canandaigua, New York where I was their guest speaker.

Once the anger was outed, the whole group of men seemed to open up. Inside the shell of anger, the men found fear, sadness, guilt, and shame. Their honesty with each other opened the door to possibilities for connecting with their children. The man who started the discussion didn’t come to disown his son-- he came to find out what he could do.

Another man talked about how getting on the floor with his son and just tickling opened the door to the possibilities of playing together. Others shared what they could do with their children and how to follow their child’s lead, and those still at a loss got ideas and inspiration. They planned to meet again.

After my presentation the next day, Jen approached me to say that her husband, Alex, came home determined to find ways of connecting with their son. Maybe now she could get some breaks. She was so grateful there was now a fathers group in their town.

Parenting and Fear (Kate Altman, M.S.)

In my four months as a parent, I have already become acquainted with the incredible joy having a child affords--as well as the intense vulnerability. A couple of days after my daughter was born, she had the "heel prick" test in the hospital, which tests for a variety of metabolic diseases, most notably PKU. Beyond feeling sad when she cried as they pricked her heel, I didn't think much about the test and promptly forgot about it once we left the hospital.

About a month later, I was sifting through a pile of mail I'd been ignoring for a couple of weeks, when I noticed a letter from the State Department of Health. I opened the envelope and found a very official-looking, very scary letter from the health department, asserting that I must have my child retested IMMEDIATELY for PKU and other diseases. The letter stressed that the diseases the tests looks for are very serious and often fatal if not treated immediately, and that I must contact my child's doctor IMMEDIATELY as it was URGENT I have her retested. Included with the letter was a pamphlet describing PKU and the other metabolic disorders the test is used to identify.

I felt slightly alarmed, but not terrified as I called my daughter's pediatrician; after all, she was a month old at this point and had not displayed any troubling symptoms. The pediatrician's office redirected us to the hospital where my daughter was delivered, which then initiated a series of confusing phone calls, transfers, and hang-ups. Essentially a bureaucratic snafu meant my daughter's "irregular" bloodwork results had never made it to her pediatrician, and because I had not read and responded to the health department's letter, her file had been marked: "Parent Noncompliant."

I was on the phone for nearly two hours with a variety of information-less sources, including the pediatrician, various departments in the hospital, and the health department. As I was on hold (multiple times), I began to read the pamphlet and learned all about the health problems--such as cystic fibrosis and maple syrup urine disease--that the test identifies. I started to imagine my child with each of these diseases and what it would mean for her and our family. My heart began to race and, for the first time, I experienced what a parent feels when they begin to suspect that something may be wrong with their child: utter terror. By the time I finally spoke to someone at the hospital who actually had my daughter's file, I had worked my way from denial to the assertion that I would wholeheartedly adopt whatever cause would help my daughter's condition, and would do whatever it took to fight for a cure. Meanwhile, I rocked my baby in my arms and told her over and over that I loved her.

In the end, it turns out that the "irregularity" indicated by the test was merely that the phlebotomist at the hospital had not drawn enough blood to get an accurate read on the test. I took my daughter back to the hospital to get re-tested, and she passed this time.

Many parents--too many--do not experience the relief I experienced in this particular situation and their worst fears are realized when their child is diagnosed with cystic fibrosis, cancer, autism, or a variety of other diseases and disorders. There are not enough words to explain the vulnerability that accompanies loving a child and facing the real possibility that he or she might suffer--and that we can't always "fix" the problem. And I am only four months in to parenting, and can't know what the future will provide.

International Autism Awareness by Robert Naseef, Ph.D.

On April 2, 2011, the Autism Society of El Paso sponsored its “12^th Annual International Autism Conference.” Over 150 people attended from 2 countries and 3 states: Texas, New Mexico, and Chihuahua (Mexico). On Friday evening, over 40 men gathered to talk about fatherhood when a child has autism. As one father put it, “The conference wasn’t about you, it was about us. You helped us to talk about ourselves and connect with each other.” As the father of a nonverbal adult son on the spectrum, that meant the world to me.Then on Saturday , over 100 men and women, parents and professionals, Spanish and English speaking, spent the day talking about families and taking care of everyone’s needs. I was their guest speaker and facilitator. Having let down their “armor” the night before, men were able to speak openly of their struggles, their dreams, and their love for their families. The women were deeply moved by hearing how much they are appreciated and then spoke from their hearts.

How is this international? When people come together across borders in different languages to speak of common experiences and shared thoughts and feelings, there is an incredible wave of fellowship and compassion. Men and women showed appreciation for each other and their struggles to be present for each other under trying circumstances. Although connecting for children with autism is different and difficult, being aware makes contact possible. As one parent shared, “If there’s anything our children with autism teach us, it is to be present in the moment.”

We are Not Alone (Kate Altman, M.S.)

My daughter is now three-months-old and she is a delight. She has also provided me with some of the most heart-wrenching, brain-numbing challenges I've ever experienced (like refusing to eat...for no medical reason!). I have noticed that each time I feel challenged, I desperately seek not only support but the sense that what I'm dealing with is "normal". I Google various combinations of words and contact each and every one of my "mom friends" whenever I encounter something I don't understand, in the hopes that I will find validation that what I am experiencing is standard. Somehow, it seems that if a textbook or web site provides an explanation for what is going on, then I can relax a bit, because the phenomenon is somehow validated (like, "Ah! Many three-month-olds refuse to eat while they are in the process of 'discovering the world...'").

My desire for validation of my daughter's experiences and behaviors has led me to reflect on working with families. So often, families would describe their child's behavior to me and ask if it was "normal" or ask for some developmental explanation of the behavior. Many times, these families weren't even looking for a solution necessarily--they could live with the issue if there was some explanation for it or if it was deemed a "typical" experience for their child's age/situation/diagnosis. I often just had to explain, "I've seen this before with other clients," and instantly the parent/s would visibly relax.

As a social species, I suppose it makes sense that we often simply want to feel that we are not alone, not completely out in left field all by ourselves. Even parents of kids with ASDs are comfortable accepting that their child's behavior is not "typical"--so long as it was at least "typical" for same-aged children on the spectrum. This strong desire to have a shared experience once again speaks to the importance of parents banding together and supporting one another. When you are feeling confused, overwhelmed, and worried about your child, the worst thing to feel is alone.