Friday, November 4, 2011

Why are there so many songs about rainbows and what's on the other side? (by Cindy N. Ariel, Ph.D)

Because somebody thought of it, and someone believed it. That's what Kermit the Frog sings, anyway. And this is stuck in my head today for a number of reasons. The biggest is my concern about the so-called 'Cassandra Syndrome.' It sounds like a real syndrome but really isn't based in any serious peer reviewed research and isn't a real clinical syndrome listed in any of the usual manuals for professionally diagnosing syndromes and difficulties. Yet, I recently had a session with a married father with Asperger's syndrome who told me that he was working with his wife on a workbook for couples when they came upon a description of the Cassandra Syndrome wherein his wife started to tell him that she was a 'Cassandra' - a misunderstood, emotionally deprived and physically suffering victim of an empty emotionless relationship caused by him due to his AS. This accusation being thrown at a man who does indeed struggle to understand his wife and children and to be the best husband and dad he can be although it did take him years to finally get to a point of agreeing he needed to learn how to do these things. The accusation seemed extremely harsh. It was one-sided and unfair based on how much growth and work this guy has put in over the past couple years to overcome some of his relative weaknesses to maintain a loving home with his family. And it keeps repeating in my mind...somebody thought of it, and someone believed it... And that's all it took for this guy's positive couples work with his wife to become a crushing experience for him.





Monday, October 17, 2011

Innocence

I had a poignant conversation with a young woman who just started seeing me for psychotherapy. She had a very difficult childhood. Both parents were critical, judgemental and self-absorbed. They were also both alcoholic and were emotionally unavailable, at best. As a teenager, she moved with her mom into the home of her new stepdad who had a teenage daughter and a son with autism. The girls had to share a room and had little in common. These were described as very dark years. I acknowledged how difficult this would have been: to have no parental support while being forced to move into someone else's bedroom who is not fond of you at all and suddenly having to live with an autistic kid on top of it all. "Oh no," she replied, "he just has some issues but he was never mean to me like all the others; we got along." Talking about her autistic stepbrother brought the first smile I saw to the face of this very sad and troubled young woman.





Tuesday, September 27, 2011

"I'm So OCD...Part 2" (Liz McGarry)

 I recently posted a blog discussing the use of psychological disorders such as OCD, Bipolar Disorder and ADD, as adjectives in everyday life. During the two weeks since I posted that piece, I have witnessed many examples of this phenomenon in action: OCD was used to describe someone who used a lot of hand sanitizer, ADD was used to describe someone who couldn’t focus in the library, and Bipolar was used to describe the weather. When I heard my friends and classmates use these terms, I made sure to ask them to think about why they chose to use them. This has allowed me to engage in many important conversations about what it really means when you say, “I’m so OCD,” and the implications that using these phrases have on those who actually do suffer from the disorder.
 One of the most meaningful conversations that I have had about this issue actually took place about five minutes ago. I was sitting at the desk in my room, messing around on my laptop and brainstorming what I wanted to write for this post. One of my housemates, Anna, (who happens to have OCD) was lounging on my bed, struggling to get through some Spanish homework. I decided to share the topic of my post with her to see if she had any insight to offer. “Oh I hear people say it all the time,” she said casually. “Of course it bugs me. People need to stop saying that they’re having an OCD moment. Sure, you may like things to be a certain way—everyone feels like that at one time or another. For me, it’s different. I don’t just want things to be a certain way, I need them to be. Unless you have OCD, you can’t possibly understand what that means.”
In the middle of this in-depth exchange, another one of my housemates, Jason, walked into the room and we asked for his thoughts on the subject. Unlike Anna, Jason has not experienced a psychological disorder, nor does he have a background in the field of psychology.  
“Well, I definitely eliminated the word ‘retarded’ from my vocabulary, that’s just not right,” he answered quickly. “It’s different with words like Bipolar though. I mean, when I say the weather is Bipolar that’s way more correct. Like, people who are Bipolar have two extremes, so when it’s rainy and then it’s sunny that actually makes sense.”
 Anna pushed Jason a little further. “Don’t you see how they are similar though?” she asked. “You wouldn’t use the word retarded, because you understand that a person with an intellectual disability is more than just a label. How is Bipolar any different?”
“Yeah,” I chimed in, “People with Bipolar disorder aren’t so black and white. They experience a range of complex thoughts and emotions just like everyone else, and it’s unfair to compare their life experience to something as simple as sun and rain.”
Realizing that Anna and I might be coming on a bit too strong, I stopped myself in the middle of my lecture and gave Jason a chance to respond. “You know it’s something I never really thought too much about,” he explained. “People say OCD and Bipolar all the time. I just never really thought that anyone was offended by it. Now that you mention it, I’m definitely going to try to quit the habit.”
Before kicking my friends out of my room (so that I could actually start writing this piece) I asked Anna one final question. Why don’t you ever speak up? If you hear people saying it and it bothers you, why not ask them to stop? What it basically came down to is this: sometimes these things are hard to talk about. Anna doesn’t want to draw attention to her OCD when she doesn’t have to, and sometimes confronting the problem is more awkward and uncomfortable than just letting it slide by. Although I totally understand where she is coming from, I think it would really make a difference if people had more discussions like the one that took place in my room tonight. I believe the issue is not a matter of hate or discrimination; it results from a lack of education and discussion about the issue. Use of the “r” word improved significantly after people started speaking up and a powerful movement was born. Maybe it’s time for a new movement. 

*I changed the names of my friends for this post.

Friday, September 9, 2011

"I'm so OCD..." (Liz McGarry)

The other day I was hanging out with some friends, reminiscing about old high school teachers, when one of my friends blurted out, “Yeah that class was so retarded!” I didn’t say anything to her about it, but it kept bugging me the rest of the afternoon. I hear the “r” word thrown around a lot. It has unfortunately become a part of our daily vernacular, despite campaigns to end its use as an insult. I can’t help but get a little bit uncomfortable when I hear it thrown around so often.
A few hours after the “r” word incident, I was working on my application to study abroad in the spring. (I’m hopefully going to Ireland to study psychology---I can’t wait!) My sister was helping me edit my personal statement, and I kept rearranging the paragraphs over and over. “Sorry I’m being so OCD about this. I just want it to be perfect,” I commented, without even thinking about it. Then suddenly it struck me. Why was it okay for me to refer to myself as OCD, which I frequently do, but totally unacceptable when my friend referred to that “retarded class”?
 This got me thinking about other times when I hear diagnoses used incorrectly. How often do you hear “she’s so ADD” or “the weather is so bipolar today”? It happens more often than you might think. By using these terms in everyday speech, we are minimizing the severity of the conditions, and contributing to stereotypes that can hurt those who actually do suffer from them. Using the terms as an adjective (i.e. “I’m so OCD” instead of “I have OCD”) implies that these conditions are a personality trait, something that can easily be changed or controlled. I find that such distorted perceptions of these disorders sometimes lead people to incorrectly diagnose each other. I frequently have friends come up to me claiming, “Oh so-and-so definitely has Asperger’s, don’t you think?”
For the next two weeks, I plan to keep a journal of all of the times I hear psychological disorders used incorrectly or offensively. I will include things I hear in television or movies, that my friends and family say, and even when they accidentally pop out of my own mouth. Although I am now making a conscious effort to remove terms like “Bipolar” and “OCD” from my everyday vocab, it is something that has been so ingrained into my language that I know it will be a challenge. I will post a new piece two weeks from today, and share what I have learned. My own little pseudo-experiment! I imagine the results will be interesting…

Wednesday, August 17, 2011

Social Skills for All! (Kate Altman, M.S.)



Sometimes when I am trying to explain, teach, or role play a social skill or unwritten social rule to a person on the spectrum, I feel stumped.  Social skills and good social behavior can be challenging for all of us!  I consider myself relatively socially-savvy (you would hope so since I've spent a lot of time teaching social skills!), but I have certainly done the wrong thing or put my foot in my mouth on more than one occasion.

Interestingly, I've randomly come across some really nice articles intended for general audience that have great tips for mastering some social rules/etiquette.  This is one from Real Simple magazine about common phrases to avoid in conversation and what to say instead.  For example, they say that you should not tell someone they look tired, but instead should ask them, "Is everything okay?"  And this is a post on a lovely blog called Enjoying the Small Things by the mother of two children, one of whom has Down syndrome.  She breaks down what it means to be a good friend and suggests some ways to be a good friend, such as "really listen" and "remember little details".

Articles like these are helpful, and also a great reminder that we can all benefit from social skills education.

Monday, August 15, 2011

All Aboard! Trains and ASD (Kate Altman, M.S.)



Until I began working with children on the autism spectrum, I did not even know that my city's transit system, Septa, had its own museum.  As child after child told me about this museum through the years, I started to wonder what percentage of its visitors are on the spectrum.  Apparently, a great deal.

According to this New York Times article, children with ASDs' overwhelming interest NYC's New York Transit Museum have prompted the museum staff to create special programs for kids on the spectrum.  Their program, Subway Sleuths for 9- and 10-year-olds, has become so popular that the museum staff have decided to expand it starting in the fall.

Many children with ASD find transportation--particularly trains--fascinating and soothing.  Train, subway and bus schedules and maps are complicated and full of detail, but the trains/subways/buses themselves are (usually) predictable and reassuring.  In my experience, I have found that so many children on the spectrum have a special interest in trains that I often have to explain to people that many individuals with ASD have special interests OTHER than trains.

I think it is wonderful that a community organization like a city transit system is recognizing and embracing its impact on children on the spectrum.  Programs like the NY Transit Museum's excite and inspire kids with ASD, invite them to participate in the community, and build social skills and friendships.

What is your experience? Have you visited a transportation museum (or a museum dedicated to another special interest)?

Sunday, August 14, 2011

ASD on TV...and in Books, Comics, Movies, etc. (Kate Altman, M.S.)



In working with children, adolescents, and young adults on the spectrum, I have often integrated representations of ASD in the media throughout the course of therapy.  I quickly found that young clients with ASD often enjoyed and appreciated the exercises.  We used pop culture and the media therapeutically in the following ways:

1.) Education.  When a person who is not a very young child is first diagnosed with an ASD, they may feel confused and overwhelmed by the diagnosis.  What does it mean to have an ASD?  How do people with ASD act?  What might my life be like?  I often direct clients who were recently diagnosed to explore ASD by reading books and poking around on the internet.  I especially like to point them to biographies about individuals on the spectrum, such as Stephen ShoreTemple Grandin, and John Elder Robison, and suggest they look for videos on YouTube made by "real life" people on the spectrum to get a feel for what ASDs are like and generally get the sense that they are not alone.

2.) Self-Esteem. I have asked groups of adolescents to look for books, comics, movies, and TV shows that feature characters who have (or may have) ASD who they think are cool.  They are often excited to discover characters with features like super powersdry, witty humor, and, courage to whom they can relate and to make the realization that talented writers, directors and illustrators have interest in people on the spectrum.

3.) Self-Advocacy.  Reading about ASD self-advocates like Stephen Shore and Temple Grandin often inspires individuals on the spectrum to think about their own self-advocacy.  The reverse works as well: some of my clients take issue with portrayal of ASD in the media, such as the poorly-written, overly-stereotyped character of Dr. Dixon on NBC's Grey's Anatomy or the Braverman family who have a son with ASD on the NBC show Parenthood.  These portrayals anger some of my clients and help to inspire them to want to correct misrepresentations of ASD in the "neurotypical" community through self-advocacy.

4.) Humor.  Typically, young people on the spectrum spend a lot of time in therapy.  So I think it is important that some of that time actually be fun and enjoyable.  And humor helps build rapport between therapist and client as well as between group members in ASD therapy groups.  Characters like Abed on Community and Sheldon from The Big Bang Theory are clever and hilarious, and it is fun for individuals on the spectrum to see ASD characteristics portrayed in a positive and lighthearted manner.

What are your thoughts about ASD in the media and pop culture?  Do you find it inspiring? Entertaining? Offensive? A combination of all three?

Tuesday, August 2, 2011

Post-Partum Depression (Kate Altman, M.S.)



As I mentioned in a previous post, I started attending a New Moms Support Group when my daughter was born.  I remember at one of these meetings, one of the mom's, "Cathy," started to tear up as she announced to the group, "The doctor officially diagnosed me with PPD.  I'm going to see a counselor and take medication to see if that helps.  It was so great to have what I've been feeling acknowledged as more than just 'the baby blues' and I'm hoping that treatment will really help." My heart ached for Cathy as the tears rolled down her cheeks and she clutched her beautiful son.  She looked so desperately sad and lonely.

Post-partum depression affects 1 in 7 women, according to this piece that aired on NPR yesterday. PPD is distinguished from the "baby blues", which are much more common and typically occur within the first few days or weeks of birth (but are also significant and ought to be taken seriously by a mother's support system).  PPD includes serious depression symptoms (severe mood swings, loss of appetite, insomnia, overwhelming fatigue), possibly suicidal thoughts or even attempts, difficulty bonding with the baby, and oftentimes, obsessional thoughts and fears about harming self or the baby.  Rarely, some women can even develop postpartum psychosis along with PPD, which may include hallucinations and/or delusions.

Many women suffering from PPD or even a significant case of the baby blues feel guilt or shame because they think they "should" be nothing but overjoyed with their new child...particularly with a "planned" pregnancy and healthy baby.  This guilt or shame can prohibit women from seeking support and treatment.  However, treatment--including counseling from a therapist specializing in postpartum issues (such as Alternative Choices, actually), joining a support or therapy group, and possibly medication--is crucial to both the health of the mother and the baby.  In general, I can't stress to parents enough the importance of self care in order to take good care of our children.

As Cathy spoke to the group that day about her struggles with PPD and her search for treatment, I remember feeling not only a sense of compassion for her, but also pride.  I felt proud of this mother who was brave enough to not only seek treatment, but also to openly share her story with other mothers. Now--after several months of treatment--she is much happier and her son is flourishing.

Monday, August 1, 2011

The Window (Liz McGarry)


Ever since I became interested in a career involving autism I imagined myself working with very young children. I know that early intervention is one of the best ways to promote healthy development in children with autism, so working with one and two-year-olds always seemed like my only option. Or so I thought…

Everything changed last semester. I will never forget the first day of my internship at the Manville School in Boston, MA. I sat in the back of the class of middle-schoolers with autism, quietly observing and taking it all in. Three teachers circled the room, helping their small group of eight boys to remain quiet and focused. I noticed one boy, Alan,* was having the most difficulty paying attention. A teacher handed him tickets when he sat quietly in his desk, and took them away when he started laughing loudly or interrupting the class with his favorite lines from SpongeBob. (I later learned that enough tickets earned Alan a coveted prize—an old set of car keys.)

During health class, the head teacher was leading a lesson about the brain. She asked the class, “What part of our body helps us to think?” It was hard for me to tell if the boys didn’t know the answer or simply weren’t paying attention, but they all stared back at her blankly. After a brief pause, all eyes were on Alan as his hand shot straight into the air. “Yes, Alan?” the teacher asked. “Brain cells,” he replied flatly, “Brain cells help us to think.”

Out of nowhere, a chorus of shouts and cheers echoed throughout the room. The noise came so suddenly I nearly jumped out of my seat. All three teachers jumped up and down, wildly dancing around the room shouting, “Alan! You did it! We’re so proud of you. Great job!” Alan’s expression shifted from bored indifference to a wide grin as he realized the sudden celebration was in his honor. At fifteen years old, this was the first time Alan ever raised his hand to answer a question.

After that first day at Manville, watching three teachers help Alan celebrate such a significant accomplishment, I knew that my original ideas about helping children with autism were totally inaccurate. I think a lot of people share the same perception that I did—that early intervention is not just the best, but the only opportunity to help children with autism learn and grow. Now I know that is far from true.

A lot of people have this idea that there is some sort of invisible “window” of time when it is possible to help children with autism. After about age five or six the “window” closes, and any further therapy or other efforts are useless. I think we need to take this idea of a “window” and throw it out the window. Early intervention is extremely important, but there is no age when a child shuts off and can no longer improve. I am now opening myself up to more experiences working with older children and teens on the spectrum, because I’ve realized that it is never too late to impact the lives of people with autism.


*I changed this name for the post.



Tuesday, July 26, 2011

Subtle Social Skills (Kate Altman, M.S.)


When treating children and even adults on the autism spectrum, one of the core areas of treatment comprises social skills training.  Many--if not most--children with ASDs spend at least some time in a social skills group or class (either in school or outside of school) and much of individual therapy focuses on social skills development and education as well.

What are social skills?  "Social skills" applies to such a broad array of behaviors, knowledge, language, rituals and graces that evolve with time, age, and culture.  Teaching social skills to young children often looks similar to a course on etiquette (say "please and thank you"; allow for personal space, etc.).  However, when children with ASDs become adolescents and adults, they must contend with and fit into a much more nuanced and complex social world.  Learning and using social skills can be much more challenging--and even more crucial to happy and healthy social functioning.  After all, an adorable 5 year-old can more easily get away with not following social norms than a 25 year-old who most probably expect "should know better".  

Social skills are not just about behaving a certain way in order to fit in to society, they are also about understanding and connecting with other people in order to make meaningful relationships.  In my research with young adults on the spectrum, I asked them a lot about how they learned to use good social skills to build relationships.  One important issue that came up repeatedly was the issue of trust in new friendships.  Trying to figure out how to know if you can trust another person is challenging, especially in a new relationship...and it is a social skill.  When I asked one young woman how she knows she can trust a new friend, she described using a simple rule she had figure out for herself: a good clue that indicates someone is probably trustworthy is if they confide some piece of important information in you first.  She described realizing she could trust a new friend in college when that friend called to tell her that her grandmother had passed away.  

I thought that the young woman's revelation was simple, yet brilliant, as good social skills rules and clues often are.  For a good book on the unwritten social rules, click here. And for information on social skills-based therapies in the Philadelphia area, contact Alternative Choices.


Monday, July 25, 2011

Autism and Empathy (Liz McGarry)

After discovering the truth about the “80% divorce rate” a few weeks ago, I’ve been wondering what other autism myths might be out there. Dr. Ariel suggested I look into the commonly held belief that people with autism are incapable of empathy. This was a topic I hadn’t really thought too much about, so, naturally, I headed to the Internet to educate myself.

My initial results weren’t exactly what I expected. I was pretty surprised to find papers by Simon Baron-Cohen, one of the most prominent leaders in autism research, claiming the exact opposite of what I set out to prove; namely, that people with autism exhibit less empathy than typically developing individuals. However, after some serious digging, I came to realize that Baron-Cohen’s definition of empathy is very different than my own. When I think of empathy, I think of compassion. The ability to care about someone other than yourself. Even from my own limited experience with autistic individuals, I know without a doubt that people with autism are able to form meaningful relationships and care about others. So what is Baron-Cohen talking about?

What I have come to understand is that there are two different kinds of empathy: Cognitive and Emotional (or Affective). Research, like this study from Haifa, Israel, shows that these two types of empathy are independent of each other, and even use different parts of the brain. Here is a basic description of each:

Cognitive Empathy (Relative Weakness in Autism): The kind of empathy that Baron-Cohen usually refers to as a relative weakness in autism is known as cognitive empathy. This is the ability to take another person’s perspective and ‘get inside their head’. This term has nothing to do with care or compassion—it simply refers to the ability to “infer what someone else is thinking or feeling”.

Emotional Empathy (NOT a Weakness in Autism): On the other hand, affective or emotional empathy is closer to my original understanding of the word. Emotional empathy is “the drive to respond with an appropriate emotion to someone else's mental states.” Research shows many people with autism are capable of this kind of empathy, and are fully able to form compassionate, meaningful relationships. A study published in the Journal of Autism and Developmental Disorders in 2008 showed “while individuals with AS are impaired in cognitive empathy, they do not differ from controls in emotional empathy,” (Dziobek et.al).

Many people with autism have difficulty understanding and predicting people’s emotions. This seems to be an accepted fact. I have learned, however, that this does not mean they are incapable of caring about others. When they do understand what others are feeling, autistic individuals are capable of just as much compassion (“emotional empathy”) as everyone else.

Click here for a video of Dr. Naseef, Dr. Stephen Shore, and Dr. Dan Gottlieb discussing autism and emotions.


Sources:

Dziobek, Isabel, Kimberley Rogers, Stefan Fleck, Markus Bahnemann, Hauke R. Heekeren, Oliver T. Wolf, and Antonio Convit. "Dissociation of Cognitive and Emotional Empathy in Adults with Asperger Syndrome Using the Multifaceted Empathy Test (MET)." Journal of Autism and Developmental Disorders 38.3 (2008): 464-73. Print.

Shamay-Tsoory, S. G., J. Aharon-Peretz, and D. Perry. "Two Systems for Empathy: a Double Dissociation between Emotional and Cognitive Empathy in Inferior Frontal Gyrus versus Ventromedial Prefrontal Lesions." Brain 132.3 (2009): 617-27. Print.

Thursday, July 14, 2011

Boys are taught that you are a sissy if you cry… by Robert Naseef, Ph.D.

Times are changing but most men have still been raised to hold in their emotions or risk ridicule.        On Thursday, July 7, I had the privilege of moderating a panel on fatherhood at the 42nd annual Autism Society Conference.  The panel was made up of fathers with the courage to open up along with autistic self-advocates, and service providers. 

As the fathers opened up, men and women listened intently.  I shared how hard I had tried to change my son, Tariq, now 31.  In the end, it was he who changed me, made me a father and the man I needed to be.
Charles Jones shared his sadness and confusion about the diagnosis, his love for his son, Malik, and his joy in Malik’s progress.  Charles is determined to make a difference in raising awareness about the needs of fathers.  His voice came through with passion in the teaser for his documentary in production—“Autistic Like Me.” (http://www.youtube.com/user/AutisticLikeMe)
Ven Squenzia is the father of a young woman with autism and the president of the Florida Chapter of the Autism Society (http://www.autismsocietyofflorida.com/).  Ven cannot imagine who he would be today if his daughter, Amy, did not have autism.  He is a tireless advocate for families with countless friends and acquaintances in the autism community.  He read a poem by his daughter expressing her love.
Dr. Stephen Shore, non-verbal until 4, has fond remembrances of his father.  Today he is professor of special education at Adelphi University and travels the world building autism awareness.  He credits both parents for believing in him.  His father’s beard felt like needles and created what Stephen refers to as a sensory violation.  Stephen did wish that his father had gotten more involved with his special interests in his youth.  His web home is http://www.autismasperger.net/    
Alex Plank was diagnosed with Asperger’s at 9.  He is the creator of www.wrongplanet.net, a social networking site for people with Asperger’s with over 52,000 members.  Alex shared some of his social struggles growing up with a funny stories and good humor.  Like many young men on the spectrum I know, he wished his father had been more helpful to him in terms of how to begin dating.
Craig Gibson spoke as a triple agent.  He himself grew up with a learning disability and openly shared how he was mercilessly bullied and how he relates to fathers’ worries about their children.  He also has a son with a speech delay, and he has served as the lead evaluator for a preschool program for children with special needs.  Craig blogs regularly at www.autismspot.com and www.sensoryspot.com.
Dr. Diane Adreon has an adult son with autism and over 30 years experience working with children and adults with autism at CARD, the Center for Autism and Related Disabilities in Miami (http://www.umcard.org/).  She talked about the important leadership roles played by fathers in the autism community of South Florida.  These men were open and comfortable speaking to her.
Speaking on behalf of the panel, I expressed gratitude for the opportunity for our voices to be heard.  When fathers open up, everyone benefits.  We will continue to express the vulnerable feelings, as we encourage others to do the same to further the needs of children and families.    

Talking to Parents of Kids with Autism (Kate Altman, M.S.)



This is a nice essay in the Washington Post by a mother of a child with autism on what people should say (or not say) when a parent tells them their child has autism.

The author laments that when she tells someone her child has autism, they often respond by minimizing the condition or its symptoms (like saying, "Oh all kids get fixated on inanimate objects! That's just normal.") or else are overly apologetic (thus overlooking all of her child's great qualities).  She also writes that her greatest pet peeve is when people offer suggestions or advice ("I heard on TV that gluten-free diets can cure autism.  You should try that!").

Whenever we hear that someone is facing a complexity or challenge, coming up with the right thing to say can be difficult.  Responding to the news that someone has a child with autism can be especially difficult; as the author points out, you don't want to minimize the challenges autism provides but you also want to bear in mind that this is still an adored, special and wonderful child.  When someone is grieving a clear loss or death, it can actually be easier to figure out what to say to that person.  But when a parent has learned that their child has autism, it is likely that they will grieve and experience great sadness, but they also still love and adore their child as much as ever and feel great joy about having that child in their lives.

So what to do?  I like the author's advice about asking questions.  Ask the parent, "how do YOU feel about your child's diagnosis?"  You can even admit you are not sure what to say.  And, best of all, simply ask the parent about his or her child: what is she like?  What are his interests? What do you like to do together?  And--if the parent is a friend--let them know you are always there to listen and offer support.

What do you think?  What have been your experiences as a parent or a person on the spectrum with disclosure to others?

Monday, July 4, 2011

Collaborative Problem Solving (Kate Altman, M.S.)



The other day I was with a friend and her four-year-old daughter.  The little girl, Jane, started to get bored and whined that she wanted her mom to play with her.  Her mom said she would when she was finished talking.  Exasperated, Jane began to whine more.  Her mom said, "Jane, if you stop whining and let me finish my conversation I will play with you.  But if you continue to whine I will not play with you.  It is your choice.  What do you choose?"  Jane took a deep sigh, but begrudgingly muttered, "I'll stop whining."  And she did, and was rewarded with some playtime with her mom, as promised.

Witnessing this exchange led me to reflect on my work as a behavioral therapist with children and their parents.  None of the children with whom I worked--whose diagnoses included ASD, ADHD, and developmental delays--would have benefited from the approach that worked so well with Jane.  Many did not have the language or comprehension capacity necessary for detailed verbal instructions, nor the ability to self-regulate, or other executive functioning abilities required to reason through the benefits of changing a behavior to earn a reward.  Therefore, the traditional rewards/consequences approaches to discipline often did not work, at least at first.

Instead, I often used Ross W. Greene's (he is the author of the parenting book, The Explosive Child) method called Collaborative Problem Solving.  Essentially, he posits that parents of children with executive functioning problems (such as the difficulties with self-regulation, problem-solving, and verbal reasoning seen in children with diagnoses like ASD, ADHD, and developmental delays) must teach their children executive functioning on the road to discipline.  He says parents must at first "be their child's frontal lobe."  To do this, Dr. Greene suggests implementing his "Plan B" approach, in which the parent first conveys empathy to the child ("I know, you really really want that ice cream right now") and gathers information about the problem, then the parent explains his or her problem with the situation ("You see, I'm concerned because I know if you eat ice cream now, you won't eat your dinner and you need to eat your dinner to be healthy and strong."), and then the parent invites the child to brainstorm with him or her ways to solve the problem.  The approach works because the genuine empathy diffuses the child's anger and frustration, and the brainstorming empowers the child and also helps him or her to exercise the problem-solving muscle.  So the child curbs his or her behaviors and also practices using executive functioning skills that he or she is lacking.

Parents are sometimes skeptical of this approach because it seems "too soft", and it is certainly not for everyone.  But when done right, I've seen Collaborative Problem Solving used very effectively with very challenging kids.  To read more about it, go here.

Have you tried it? What do you think of this method?

Thursday, June 30, 2011

New Horizons Club Visit (Kate Altman, M.S.)

The other night I had the pleasure of visiting the New Horizons Club, a social club in the Philadelphia area for adults on the autism spectrum.  I have visited this group a few times over the past couple of years, and I was shocked by how large it has grown; there were over 30 people in attendance at the monthly meeting.  In addition to meeting each month, members (usually in smaller groups) participate in social outings and activities.  These range from everything to a night of bowling to a weekend trip to the beach.  Group members are 18 years-old to middle-aged with everything in between.  Oh, and the group is nearly half female right now.

As I walked into the room (I was there to give a short, informal presentation), many of the group members cheered and greeted me warmly.  Everyone introduced themselves.  They asked about my baby and asked to see pictures.  As I presented, many members asked pertinent questions, shared interesting comments, and were an appreciative and supportive audience.  Several people disclosed their own stories and struggles, and one married couple even described how they fell in love.

I had a wonderful time with this group, and floated out of the meeting at the end of the night, buoyed by enthusiasm from the members.  I am in awe of how incredibly powerful and important a social group like the New Horizons club is for adults on the autism spectrum.  I desperately wish more such groups existed.

Friday, June 24, 2011

LGBTQ Adolescents: The Importance of Support (Kate Altman, M.S.)



Last week at the conference I had the privilege of attending an excellent workshop on treating adolescents who are lesbian, gay, bisexual, transgender, or questioning (LGBTQ).  I was saddened to hear that LGBTQ individuals continue to have the highest rate of suicide and suicide attempts among adolescents.  I had heard this statistic before, but was hoping it had diminished recently.  I live in a very accepting community, work in a field that supports the fact that homosexuality is a biologically-determined sexual orientation (read about the American Psychological Association's position on homosexuality here), and have a gay brother I adore, so I sometimes forget how much adversity and rejection many (probably most) LGBTQ individuals face--particularly adolescents.  Pre-teens and teenagers--who are already at more risk for bullying and rejection than adults, regardless of sexual orientation--often face even more social and family hurdles than adult LGBTQ individuals.

Another interesting statistic I learned about in the workshop indicates that adolescent females who identify as lesbian or bisexual are even more at risk for teen pregnancy than their heterosexual counterparts.  The presenter hypothesized that parents and educators are less likely to talk with these girls about safe sex, because they either know or perceive they are gay or bisexual.  Furthermore, LGBTQ youth in general are more likely to abuse substances than heterosexual teens(another troubling statistic), and substance abuse can lead to unprotected sex and unwanted pregnancy.

Ultimately, the workshop elucidated how important it is that we support LGBTQ adolescents, and offer them excellent counseling options during this often difficult stage of development.  By ignoring and diminishing their needs, we risk literally losing these children.

Looking for more information on psychotherapy services for LGBTQ individuals?  Contact Alternative Choices at (215) 592-1333.

Thursday, June 16, 2011

Reflecting on Alternative Choices (Kate Altman, M.S.)

On Wednesday, after we wrapped up the workshop on positive psychology interventions for individuals with ASD, several audience members came up to me to ask about Alternative Choices and the services we offer. These were all psychologists who were interested in referring their patients to a practice that specializes in treating individuals on the spectrum. Unfortunately, a practice with this expertise is rare, so people are often very excited to hear about Alternative Choices. It feels good to be able to tell therapists, parents, and individuals with ASDs that I can refer them for help at a place that is well-prepared to meet their needs and exceed their expectations. The practice offers treatment not only for children and adolescents on the spectrum, but adults with ASDs as well; they also do comprehensive assessments to determine if a person should be diagnosed with an ASD (again, both children AND adults).

However, one of the main reasons I originally chose to contact Alternative Choices about doing a practicum there for school (which eventually led to employment) was not only the strong reputation for treating ASDs, but because it is also a well-rounded practice proficient in serving all kinds of populations and treating all kinds of diagnoses and issues. The therapists on staff do couples counseling, family therapy, individual therapy, and therapy with children and adolescents, and treat everything from depression and anxiety to trauma to postpartum depression (and much more). As a student and new therapist, I knew I would get a well-rounded experience. Now that I am often out in the community giving presentations, I am happy that I can refer people to a practice for a variety of reasons and know they will receive excellent care.

Interested in learning more about Alternative Choices? Visit this website and you can also call 215-592-1333 and leave a message so that someone can call you back to speak with you specifically about your needs.


Wednesday, June 15, 2011

"Autistic Like Me": A Fathers Day Commentary by Robert Naseef

Film Director Charles Jones was speechless with excitement when he held his son for the first time. He put his feelings into words in his YouTube video “Autistic Like Me” which a a teaser for a documentary in production at http://www.youtube.com/user/AutisticLikeMe

“When he arrived I had a son, a miniature version of me. I had someone to whom I could impart my values. For a father, a son is a mirror in which he sees himself, and I couldn’t wait to watch him grow. I would teach him everything I know in order that one day he would be a better version of me.” As I related to Charles, I reflected how I also wanted to be a better version of my father when I held my son Tariq for the first time 31 years ago.

Two and a half years later, the mirror broke for Charles when Malik Jones was diagnosed with autism. “It was like a rebirth, only this time I was devastated…I felt guilt, shame, hurt, and most of all cheated. Why me? Why Malik?”

For Charles and other fathers, especially those with autistic boys, the “broken mirror” leaves us powerless and shamed. We love our children and don’t want to fail them. This sequence occurs for men generally as described by psychologist David Wexler in “Men in Therapy”. “Autistic Like Me” resonates with the fathers who have watched the video with me in groups at conferences around the country and in my office in Philadelphia. Hearing from Charles has helped open up powerful and liberating conversations.

When it comes to emotions, there is a male imperative to “suck it up.” Expressing tender feelings is traditionally seen as weak. So men tend to cry on the inside, as my father told me he learned in the orphanage where he grew up. On the outside we may be grumpy and irritable, but on the inside we are hurting. Life doesn’t stand still and wait for us. Our families need us to express ourselves, and to show up and be present day by day.

Since expressing vulnerable feelings violates unwritten and unspoken male gender codes, asking a male how he feels evokes an automatic “I don’t know” response resulting in frustration and distance for his partner. So what helps men to express themselves especially when they experience a broken mirror when living with an autistic child?

What I have found in my work with parents of children with autism is that men can begin to learn this in groups of men or even in one-to-one conversations with other men who have a similar experience.Without the fear of performing poorly or being “wrong” there is a sense of safety from shame. When this happens, men then can begin to express themselves with women. This happens over and over at conferences and in my office.

Don’t start by asking a man how he feels. “Guy talk” helps in any situation such as:

  • Tell me your story...
  • What’s it like for you? (curiosity works better than empathy)
  • Tell me more.
  • I need to know to be your friend/ wife/ brother, etc.
  • Your child needs you.
  • It takes courage to open up and I admire you for that.
  • Let’s figure out a plan to go forward.

Listening and disclosing needs to happen more slowly for men as we are more easily overwhelmed by tender emotions. Living day by day this is how I grow and help others.


Sunday, June 12, 2011

Positive Interventions and ASD (Kate Altman, M.S.)

This week I will be presenting a workshop called "Positive Psychology Interventions for Adults and Children with ASD" with Dr. Katherine Dahlsgaard and Tim Wilson at the Pennsylvania Psychological Association's annual convention. The convention serves psychologists and psychology students in Pennsylvania.

As the title indicates, our workshop will focus on using positive interventions in working with individuals and groups on the autism spectrum. Positive interventions (based on positive psychology, the scientific study of strengths: http://www.ppc.sas.upenn.edu/) are tools that can help a person think more creatively and more openly, enhance mood, and build self-esteem. For example, one of the interventions we talk about is simply monitoring positive moods--taking the time each day to pay attention to positive moods when they occur (even if they are fleeting) and focusing on what they feel like physically (the stretch of a smile on your face) and internally (slower, clearer thoughts; flow of creative ideas).

Positive psychology and positive interventions often seem very simplistic in explanation, yet when they are exercised they can be profoundly effective.

What do you think of the notion of focusing on the positive in therapy (not exclusively, but sometimes)? What do you think about using these methods with kids, adolescents, and adults on the autism spectrum?


Monday, June 6, 2011

My Autism Journey (Liz McGarry)


After silently filing into the room, I hesitantly took a seat in a small wooden chair against the wall. The rest of my peers, a small group of fifth-grade students selected for this very special mission, joined me in the back of the room. Although we carefully eyed the five little children squirming in their desks, they didn’t seem to mind or even notice our intrusion into their classroom. Before the teacher could introduce us, a piercing shriek broke the silence. I quickly turned to my right to discover the source of the noise—a small child barreling toward me with the fury of a professional wrestler! Smack. Mrs. C darted across the room just as little Albert slapped my arm with all of his might. Fortunately, Albert did not have the strength of a professional wrestler. I wasn’t hurt, but I can’t say that I was too happy either. What just happened? “Sorry Elizabeth,” Mrs. C explained, “You see…you’re sitting in Albert’s chair.”

At the age of eleven, I was selected to be a student volunteer in Mrs. C’s autistic class: my first encounter with autistic children. But it would not be my last. My name is Liz McGarry, and I am now a junior at Tufts University studying child development and psychology. I am currently working as an intern for Alternative Choices, as well as the Center for Autism Research in Philadelphia. You might be thinking, after such a violent introduction to the world of autism, what would inspire me to continue to study it and pursue a career involving autistic children? For me, it was the desire to unlock the mysteries of the disorder and to help children like Albert who have so much trouble communicating even their most basic needs.

I now know a lot more about autism than I did in fifth grade, but I still have a lot to learn. New discoveries are always being made as I race to catch up on all of the interesting articles and research that is already out there. Family and friends who know of my “autism obsession” constantly forward me news clips or articles about autism, and I love passing them on to others. I am grateful for the opportunity to use this blog to share my journey toward an autism education, as I learn more about the signs, treatments, and causes of this mysterious disorder.

Friday, June 3, 2011

Pick Your Battles, Win the War (Kate Altman, M.S.)

“Pick your battles.” That’s the best piece of advice I learned from a (very strict, actually) behavioral therapist when I was new in the field.

I glimpsed my future yesterday when I had lunch with a good friend and her two-year-old. Or, I should say I ate my lunch while she chased him around the (kid-friendly restaurant) telling him things like, “Don’t take those toys. They aren’t yours!” and, “Stop playing with that water. That’s for washing your hands…you’re spraying people!” She’d sigh in exasperation as he’d inevitably respond with a resounding, “No!” while continuing to do whatever he was doing. At one point she turned to me with an expression of defeat and said, “The terrible twos. And I hear the threes are worse!” I was exhausted just thinking about it.

Discipline and boundaries are extremely important in raising children. They keep your child safe (“Never run into the street”), help them learn self-regulation, and make them sociable and likable so they can be successful with others.

However, constantly disciplining and going head to head with a child can actually backfire, plus it can lead to exhaustion and demoralization for the parent. Therefore, sometimes you just have to pick your battles; focus on what’s most important and be consistent with warnings and consequences. Parents who take a moderate, authoritative approach often seem to have a great deal of success in disciplining their children. Hopefully I will remember these strategies in a couple of years!

Sunday, May 29, 2011

Loner Style (Kate Altman, M.S.)

While we were dating, my husband, Jon, and I would joke that someday we would have the perfect child (and of course we did! Haha) because in some ways we are so different that we complement each other and fill in each other’s gaps. One of our major differences is that I am extremely people-oriented and social and he is a natural loner. I am forever dragging him to dinners with new friends (I recently asked him to do an impression of me…and he immediately launched into a peppy monologue that began: “Oh my gosh I met this amazing woman today! Her name is Alison and she is so smart and interesting and we have so much in common! You will love her! And it sounds like her husband is a lot like you so you two will hit it off…We’ll find out because I made plans for us to have dinner with them this weekend!”). Jon is almost always a good sport and he usually has a great time at these social outings. He is funny and sweet and people love him (again, of course!).

I just began reading the popular psychology book, “Party of One: The Loner’s Manifesto” by Anneli Rufus (given to me, appropriately, by my mother-in-law). The book posits that being a loner is a healthy—if not superior—state and that we live in a society that pathologizes “loner-ism”. After all, we have mental health diagnoses like Avoidant Personality Disorder and the typical image of a person with Major Depression is someone who withdraws socially, yet we don’t have an “Overly Social Personality Disorder” or worry about someone who is forever engaging with others.

Jon simply needs alone time (which can include me and our daughter) to retreat from the social world, decompress, and focus on independent activities like playing music and reading. While I have never stuck with a hobby besides reading (I have a whole trunk full of half-finished knitting projects), Jon has taught himself to play guitar, to cook and bake, to fix things and garden. He can entertain himself for hours; he reads books and writes jokes and notes to himself in the margins. He almost never gets bored or stir crazy, which I most certainly do after a few hours in the house.

Being a loner does not mean a person is lonely, depressed, or antisocial. It is simply a personality style, and a valuable one.

Are you a loner? Do you feel pressured to behave more socially than you would like?

Thursday, May 19, 2011

Finding a Therapist (Kate Altman, M.S.)


Ever since I entered the mental health field, friends and family have approached me to ask for referrals and ask for advice about how to find a good therapist. Unfortunately, I heard many stories from people who tried therapy but gave up when the first therapist they tried was unhelpful, unethical, or just not a great match for them. This article from NPR offers some good tips to help you "shop" for a good therapist: http://www.npr.org/2011/05/16/136283080/shop-for-a-pyschotherapist-to-avoid-the-lemons

As the article points out, there are many different types of therapy, and it can be overwhelming to sift through all of the types of therapy and various therapists out there...especially if you are suffering from mental health issues like depression or anxiety. But I do recommend doing some research if you can...or enlisting the help of a trusted friend or family member to help you. If you have a sense of what your diagnosis/problem may be, you can pretty easily discover what types of therapy have evidence for treating that diagnosis (such as exposure therapies for trauma, CBT for specific forms of anxiety, and psychodynamic therapy for interpersonal issues). It is also important to consider your personality and personal preferences. Are you a short-term, solution-focused thinker, or do you prefer analyzing relationships and exploring emotions over a long period of time? Do you want a therapist in a didactic, authoritative role or do you prefer a collaborative approach? Having at least a sense of what works for you can help you weed through lists of potential therapists and ask good questions when you interview them over the phone and/or in the first session (and don't be shy about doing so!).

Though doing some research and taking the time to speak with a few different therapists may feel overwhelming when you are in need, it is worth the effort. Don't be afraid to ask people you trust for referrals: word of mouth is often still the best way to find someone good. Above all, don't give up Even if you don't love the first (or second) therapist you meet, keep looking...the perfect fit is out there.


Monday, May 16, 2011

New Book: Individualized Autism Treatment

30 years ago this month, my son’s autistic symptoms emerged. Having lived with autism in the family for almost 3 decades, Individualized Autism Intervention for Young Children: Blending Discrete Trial and Naturalistic Strategies, is quite simply, in my opinion, the best book yet in sorting out what we know and what we can do to alter the course of autism in young children. As an expert senior psychologist and grandparent, Travis Thompson has given us a ground breaking contribution based upon solid theory and emerging research evidence.

From the Brookes Publishing web site: “Discrete trial instruction or naturalistic, incidental teaching: How do you choose which approach to use with young children with autism? Now there's no need to ‘pick a side’—this groundbreaking book helps professionals skillfully blend the best of both behavioral approaches to respond to each child's individual needs this guidebook cuts through the chaos of conflicting information and gives readers a logical, child-centered way to plan and implement intervention.”

I am particularly excited about the possibilities for the Autism Intervention Responsiveness Scale, Research Edition, which is included in the book. This scale gives professionals an in-depth guide to creating an autism intervention profile for each child, based on the type and severity of the child's autism characteristics. By completing the profile, readers can then match individual characteristics and needs with a specially tailored blend of discrete trial and developmentally oriented naturalistic teaching.

On the other hand, I am deeply troubled by budget cuts that threaten services vitally necessary for children with autism and their families. As Thompson notes, “Most evidence indicates that 25-30 hours per week of one-to-one intervention over the first 1-2 years is required to make significant gains in core autism symptoms for children who are responsive to this form of treatment.” (p.41)

The time is now for professionals and families to push back through our organizations and the political process for what children need and deserve to have the best life possible.

Read an interview with Doctor Thompson at http://www.brookespublishing.com/autism/authors/thompson.htm

Tuesday, May 3, 2011

A Mothers Day Plan for Dads

Why is it so hard for moms to take a break? Renowned child psychiatrist, Donald Winnicott (1896-1971)said that struggling with taking a break from maternal responsibilities is normal. “Primary maternal preoccupation is a consuming attachment to one’s baby, a normal sickness from which most mothers recover.” He was talking about the mothers of typical children—who presumably have a little less to be preoccupied with on the average than mothers of children who have autism and other special needs. So it’s normal, but when it goes on indefinitely, it’s not healthy.


Winnicott appeared regularly on public radio in the United Kingdom. When asked how he knew so much about mothers, he responded that most of what he learned came from listening to mothers. He also wrote, “I think mothers are helped by being able to voice their agonies at the time they are experiencing them. Bottled up resentment spoils the loving which is at the back of it all.”

Opening up and connecting about upsetting situations can help. On the other hand, suggesting that a mother do more to take care of herself often makes her feel worse. Listening to mothers in our practice at Alternative Choices, we hear that this can sound like just one more thing to do. And another thing they just aren’t getting right-- even more guilt!

In contrast, the average overwhelmed father seems to have less difficulty taking a break. He may also have trouble talking about what he cannot fix or take action about, which offers no outlet for his partner’s feelings. He may shut down out of helplessness and emotional overload that he has no words for. The very same man may love his partner and children passionately; yet he may feel left out and ignored.

Still, most fathers admire when the mother of their children reacts like a mother lion with her cub, doing everything possible to raise their child.

So for this Mothers and Day and every day really, here’s a plan for men. Tell your partner how much you appreciate her and everything she does for your children. Be specific about all the wonderful things she does and how hard she tries. Ask what you can do to make her job easier. Gently and persistently keep asking and showing up to do stuff. This is how to be a good man in your situation. Help her to take a breath, literally and figuratively. Most likely you will be helping her feel better—it may even lead to her taking a break.

Friday, April 29, 2011

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.

Tuesday, April 26, 2011

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.

Monday, April 25, 2011

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.

Thursday, April 14, 2011

International Autism Awareness by Robert Naseef, Ph.D.

On April 2, 2011, the Autism Society of El Paso sponsored its “12th 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.”

Wednesday, April 13, 2011

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.

Monday, March 28, 2011

'When I hug my son, he doesn't hug me back" by Robert Naseef, Ph.D.

March 24, 2011. Cincinnati. Ten fathers of children with developmental disabilities and 2 male behavior specialists sat around a table on Friday evening waiting to hear what I had to say about being the father of an adult child with autism. They were wondering out loud what it would be like. Only a few had ever been to such a gathering. 10 out of 10 had children on the autism spectrum ranging in age from 6 to 24. Before the discussion began I told them that nothing they said would be wrong. They seemed relieved; then I invited them to share their experiences.

No accident that “When I hug my son, he doesn’t hug me back” resonated in the hearts of these men. Autism at its core is a social disorder of relating and communicating. Mothers have the same heartbreaking moments. It’s just that fathers are far less likely to verbalize their experience.

It’s a stereotype that children and adults with autism don’t connect. But they are not easy to bond with. Another father pointed out that his 7 year old son connects in some ways and not others. This was a rare opportunity for fathers to bond with each other and experience a sense of fellowship.

It felt good to be able to create that space for men by sharing bits of my own journey. Some of their children are nonverbal, some speak slowly, and others can’t stop talking. As one father mentioned his son who is slow to speak forces others to slow down. Because our children connect and speak differently, we have to pay attention closely. They actually engage us in a different way.

The men talked about their struggles and what they are learning. For example, the type of discipline many of their fathers used with them just didn’t work. Some spoke of “belt lessons” they received, and others described the shame they felt when not meeting their fathers’ expectations.

Then I guided them in a discussion of what they are learning. One man shared how he was still learning to be a father after 5 years. Others were finding they couldn’t shape their children into who they had expected them to be. They were making new dreams. Yet they worried about the future. Could their children ever live on their own? If not who would look after them?

Sharing that he was never known for patience, another man spoke of how much more patient he was becoming with his son who “speaks in slow motion.” One 18 year old still loves to wear Barney t-shirts. His dad finds sweetness and innocence in that but worries about him being targeted by bullies.

Finally we discussed things they enjoy doing with their sons and daughters. Some weren’t sure, so I just encouraged them to search and explore for those moments which might not be planned. Another man shared how he had decided to take his son who is nonverbal with him on a Saturday morning while doing errands. He enjoyed having his boy along, but he wasn’t sure if his son actually liked it.

Warm memories of riding with his own dad opened up because he had really enjoyed that one-on-one time as a kid. When he got home, he wrote on his Facebook about having a good time doing errands with his son. Several friends wrote back saying they too loved doing errands with their dads. He had stumbled on happiness with his son.

My approach was not about replacing negative thoughts with positive thoughts. It wasn’t about sugar coating their often exasperating lives. It wasn’t ranting about the injustice of it all, although that was allowed to happen freely. I tried to help them find a balance so they can be honest about their frustrations and their sorrows which come and go while also seeing and feeling the moments full of meaning and happiness which also come and go. This is what it is like to be a father or a mother of a child with autism. But even more this is what it’s like to live.