Signs of Love: A closer look

I recently came upon a posting from a joyous new mother citing an article on “signs your babies love you.”  I soon found that many websites that cater to new parents have articles listing the ways parents can determine that their babies love them.  I was appalled.

First, the title of such articles is not accurate.  The “signs” that these articles list are not indications of “love,” but actually signs of appropriate social-emotional development (in Western culture).  Of course, “signs of love” is a much catchier title than “developmental milestones,” but the distinction is a very important one to make.  The following are some examples of behaviors included in these articles:

  • Eye contact
  • Smiling at you
  • Noticing when you enter a room; showing an eagerness for your attention
  • Coos at you
  • Reaches his/her arms at you to signal that he/she wants to be picked up
  • Showing distress when you leave

These behaviors should most certainly be celebrated; not as signs of “love,” but rather as signs that the baby is developing fundamental developmental capacities, such as the capacity to share attention and relate and engage with their caregivers.  These foundation skills are essential in developing self-regulation, socialization, emotional processing, play skills, and many, many other developmental milestones.

Second, and more disconcerting to me is the impact of such articles on parents of babies who may not be showing these signs. There are many parents whose children with special needs do not display these signs, but under no circumstance does that mean these children do not love their parents, or that this should be questioned by the parents themselves or anyone else. It is important for parents of children with neurodevelopmental differences in relating and communicating to know that just because their children do not look at them or engage with them as expected, they still do love them. These parents and children may need the support of professionals who are specifically trained in helping parents and children attune to one another.  Stanley Greenspan, MD’s DIR (Developmental Individual Differences Relationship-based) model and related Floortime approach1 specifically addresses this. Such support may include identifying and developing expressions of love in unique and wonderful ways.

Third, and probably most alarming to me is the impact of such articles on the babies themselves.  Imagine a child who is born with developmental differences.  Maybe he has difficulties coordinating his eye gaze because his visual system is not well-integrated with other sensory systems, which impacts his ability to make eye contact.  Maybe her sensory system is overloaded and cannot process a combination of stimuli in loud and busy environments.  Maybe he doesn’t register that his parent entered the room because his auditory system has trouble quieting and ignoring the extraneous buzz and brightness of the fluorescent lights.  Maybe she needs so much swaddling and rocking to feel regulated that she has not yet mastered (or have time to master) attending to her mother’s face.  How sad for such babies that their developmental differences may be misinterpreted as a lack of love or affection for their parents.

The last thing children who are born with developmental challenges need are caregivers who think that they do not love them.  From my experience working with autistic self-advocates, they are glad to express and explain their unwavering love for their parents, even though they may never had made eye contact with them when they were babies or displayed other signs listed in the aforementioned articles.

Thinking again about the parents, giving them the false idea that their babies do not love them is far more likely to dishearten, sadden, worry, and possibly depress parents, rather than spur them to reach out for support, ask questions of their pediatrician, or initiate a developmental screening.  Thinking or feeling that your baby does not love you is likely to be embarrassing, which may even be an impediment to seeking help.  Further, I shudder while wondering if such parents may subconsciously change their behavior toward their babies if they do not think their babies love them, rather than understanding that they may need support in developing these social-emotional behaviors.

I am thrilled with the anecdotes often shared by parents of children with autism spectrum disorders (ASD) and other neurodevelopmental challenges who have learned to attune to their children and develop more robust relationships with them.  I have heard numerous accounts of how those parents recognize the, often unconventional, signs that their children love them:

  • “He (five year old) never used to look at me, but when I swing him around fast the way he likes me to, he looks right at me.”
  • “She (three year old) presses her chin into my knees, which prompts me to squeeze her tightly.  That’s when I know she is with me.”
  • “The more I join in with his (10 year old’s) interests, the closer he stays to me, and the more he wants to be around me.”

These expressions of love are reflections of the beauty of parent-child relationships among those with a range of developmental differences, and are worthy of celebration.  Lets remind ourselves that the signs most commonly listed in the general media should be celebrated as signs of social-emotional milestones in Western culture.  Suggesting that they are signs of love can be dangerous to those with developmental differences or special needs and their families.

 

1 For information on DIR/Floortime, see:  Greenspan, S. & Wieder, S. (1997). The Child with Special Needs. Perseus Books, and http://www.icdl.com.

“I have Autism”: Self-advocacy and Learning from the individuals we serve

By Dr. Jaime Marrus

As a psychologist working with individuals with a range of communication abilities, I often find myself wondering about what my clients are thinking, specifically with regard to the effectiveness of a particular intervention or treatment approach. Thus, I recently came across a report commissioned by the Office of Developmental Primary Care (of the UCSF Department of Family and Community Medicine), prepared by the Autistic Self Advocacy Network of Greater Boston. In reading the document, titled “First-Hand Perspectives on Behavioral Interventions for Autistic People and People with other Developmental Disabilities,” I was reminded of an experience I had just over a year ago.

I was at a friend’s destination wedding, and during the rehearsal dinner, the “emcee” of the evening (the groom’s brother), introduced the next speaker who was to share her well wishes for the couple— one of the bride’s sisters. As the rest of the guests sat in dresses and sleeveless tops (Northerners enjoying the Floridian weather), the bride’s sister walked up to the podium wearing a purple puffy winter coat and sweatpants. She introduced herself as the bride’s sister, and then simply stated, “I have autism. So I don’t like talking in front of crowds.” She then went on to deliver a speech riddled with humor, insight, and incredibly practical and heartfelt advice for the newlyweds-to-be. Needless to say, I experienced a surge of emotions as she wrapped up her speech: joy, pride, awe, compassion.  Tears sprang to my eyes and I looked down to see my hands clapping wildly.  I looked around at my fellow guests to see them all dabbing at their eyes with napkins, and some even rising from their seats to applaud.

As I reflect on that evening, I remember wondering about what the other guests were thinking. Surely, I thought, they were responding to many different things in the moment: that the young woman “made it through” her speech, that she even had the courage to make the speech at all, and, not the least of which, that her words themselves were brilliant and funny and kind.  And of course, I appreciated all of those things as well, in spades. But I was most focused on her opening statement, declared using the same conviction with which she doled out marriage advice: “I have autism.” This simple statement and its effect on me resounded so much with Dr. Tobing-Puente’s message in her previous blog, “21 Years of Autism,” specifically the theme of self-awareness and self-advocacy.  As a psychologist who specializes in working with individuals with autism spectrum disorder and their families, I was truly touched by the heartfelt reactions of the guests around me. However, I continue to be even more touched by the speechmaker’s own frankness, her openness in speaking her truth.

I am grateful to be at this point in my career during a time in which self-awareness and advocacy is growing stronger.  I recently completed the LEND fellowship program (Leadership Education in Neurodevelopmental Disabilities), in which professionals from a variety of disciplines (e.g., psychology, social work, occupational therapy, speech/language therapy, etc.) were trained to assume leadership roles in their fields.  For me, a noteworthy component of this program was the participation of a “self-advocate” as a LEND fellow himself, participating in the same curriculum to apply to his own career in policy and self-advocacy.  As emphasized by the self-advocacy network that prepared the aforementioned report, I believe it is so important to learn from the very people we are serving, and I plan to continue to seek such opportunities throughout my career.  I am always eager to read works published by self-advocates and/or their families (e.g., The Reason I Jump by Naoki Higashida, Thinking in Pictures by Temple Grandin, Look Me In the Eye, by John Elder Robison), and hope to engage in enlightening dialogue with my clients and their families about lessons learned from them. As noted in  “21 Years of Autism,” in which Dr. Tobing-Puente discusses “how the world has changed with respect to autism” during her decades of work, and in relation to the NAA-NY Metro panel, I also feel fortunate to be in a position to use the training and knowledge that I have (based on the DIR/Floortime model) about individual differences, including sensory processing profiles, to help families understand why their children may behave in certain ways… or why it is perfectly okay to wear a puffy winter jacket to a rehearsal dinner in Florida.

P.S. I encourage self-advocates, caregivers, and professionals to read the report written by the Autistic Self Advocacy Network of Greater Boston. However, for those who would like a quick glimpse, here are some brief excerpts from the report that stood out to me:

“The Autistic Self Advocacy Network of Greater Boston prepared this report to provide personal perspectives on behavioral interventions for people with developmental disabilities. These interventions include Applied Behavioral Analysis (ABA), Floortime, and cognitive-behavioral therapy (CBT). We believe strongly that people with lived experience can provide well-needed perspective on what works and doesn’t work for them, and that service providers working with people with disabilities can benefit from first-hand accounts.”

“In the interviews and questionnaire responses, participants identified values they considered important in behavioral treatment: promoting positive outcomes, preventing harm to people with disabilities, protecting people’s autonomy, advocating for inclusion, being sensitive to people’s past trauma, and supporting cultural competency.”

“Participants preferred treatments to focus on skills that would help them understand their own disabilities and coping with sensory overload, as opposed to therapies that made people look less autistic on the surface. Therapies that participants considered helpful included occupational therapy to help with sensory integration, play therapy, social skills groups for children, job coaching, mentoring, and mindfulness to help with anxiety. All the therapies suggested were aimed at encouraging self-determination and self-care, rather than indistinguishability from their peers.”

“Autistic people and other people with developmental disabilities are not a monolithic community. They can come from all racial, ethnic, socioeconomic, and cultural background…”

My Interview on Fox 5 NYC News

fox-5

On Friday, 11/18/16, I had the pleasure of being interviewed by NYC’s Fox 5 News  for a story they were doing on Darius McCollum, the NYC man who was diagnosed with Asperger’s syndrome, and has been serving time on Rikers Island due to his most recent arrest for stealing and operating a charter bus.  The new movie, Off The Rails,  documents Mr. McCollum’s passion for trains and buses, his many arrests, and his difficulties obtaining proper treatment.  I was glad to have the opportunity to speak about the needs of individuals with Asperger’s.  See below for the clip and article:

http://www.fox5ny.com/news/218513254-story

Please note that Asperger’s is no longer recognized by the Diagnostic and Statistical Manual of Mental Disorders, in its most recent Fifth Edition.  Asperger’s was one of the Pervasive Developmental Disorders (of which Autism also was a diagnosis).  Currently, the umbrella diagnosis of Autism Spectrum Disorder covers individuals who formerly were diagnosed with “autism,” “Asperger’s” and “pervasive developmental disorder-not otherwise specified.”

Free Parent Workshops: Transitioning to Kindergarten

I am excited to announce that I will be presenting my annual FREE parent workshop on Ensuring a Successful Transition to Kindergarten at both office locations this spring. Please forward to any parents of children of children with special needs who are navigating the “Turning Five” process and preparing for kindergarten starting September 2016.

East Village/Manhattan:
Wed, May 11, 2016
7:00pm-8:30pm
At Watch Me Grow, joined by Bari Keller, PsyD
525 East 12th Street (between Ave A and Ave B)
New York, NY 10009
Bayside/Queens
Wed, May 25, 2016
7:00pm-8:30pm
38-50 Bell Blvd
Suite A1
(enter between Bell Blvd and 213 St)
Bayside, NY 11361
Please RSVP to: services@drtobingpuente.com
Please see flyer below for additional information.

Successful Transition to Kindergarten flyer-2016

21 Years of Autism

Following an incredible evening which entailed the honor of moderating a panel of young adults diagnosed with autism (with NAA-NY Metro), it occurred to me that it has been more than two decades years since I began working in the field of autism.  21 years is a long time, especially in the world of autism which has changed so monumentally during this time.  One aspect of last evening really stood out in terms of how the the world has changed with respect to autism.  A parent in the audience asked the panel whether and how often they tell people they have autism/Asperger’s syndrome and whether they had experienced any stigma.  By and large, the members said that they tell others frequently, often at the first appropriate moment, so that there is understanding about any of the quirks with which they might present.  None of the panelists reported any stigma.  This is truly remarkable.  The degree of awareness has grown so much so that these particular individuals, in NYC, find that others know what autism is, as well as feel comfortable (and not ashamed) of the “label” that explains who they are.

Twenty-one years ago, when I was an undergraduate sophomore looking for direct experiences with children to boost my eventual application to clinical psychology graduate school programs, I first met children with autism working in a school and research setting using the Applied Behavior Analysis (ABA) approach.  Back then, even knowing of one child with autism was highly rare.  The Diagnostic and Statistical Manual of Mental Disorders-Fourth Edition (1994) indicated a rate of autism of 2-5/10,000 individuals; now rates of autism spectrum disorder [note the change in terminology] have been found as high as 1 in 68 children via the CDC .  Back then, ABA was the primary (and often the only known ) treatment approach in most circles (with the notable exception of a few, including Dr. Stanley Greenspan).  When I spoke of my work with these children, people both in and outside of psychology had no experiences with which to compare. Frequently, the only reference to autism was often from the movie, Rainman.  Services for families of children with autism were few and far between.

Since 1995, I have worked as a teaching assistant training other undergrads in ABA, worked in a private home-based ABA program for children with autism, an early intervention (EI) center- and home-based program using ABA and DIR/Floortime, at the Rebecca School , and in my own private practice using DIR/Floortime.  In 2001 , I began a parent support group for parents of children with ASD in the EI program.  Sessions centered around explaining what autism was, ideas about causes, and ensuring that parents were not feeling the blame attributed to them by outdated unproven theories.  During parent groups now, the discussion and concerns brought from parents of recently diagnosed children are much different.  They are more about learning about treatment approaches and advocating for the proper services rather than “what is autism?”

Another amazing aspect in the field has been the self-advocacy efforts of many individuals with ASD.  By sharing their stories (in published books, blogs, by speaking at conferences), a wealth of knowledge has been conveyed directly to the public from those with ASD themselves. I continuously learn from these individuals, adding a crucial layer to the work that I do.  Last night’s NAA-NY Metro panel was a testament to the incredible impact on the field of autism these individuals have.  These brave individuals (for whom, by nature of their disability, expressing themselves in a social context is quite difficult) shared their life histories and amazing successes in an articulate and inspiring way.  I do not think that this type of forum happened two decades ago.

A resounding theme from last night’s panel was self-awareness and self-advocacy and how necessary these are for success.  Many asked, “How do you develop self-awareness?” Panelists’ replied about their exposure to neurotypical peers and having at least one friend who pointed out their differences.  I was glad to have my DIR/Floortime background to provide an additional response (especially for those who have less access to neurotypical peers). My DIR/Floortime training has taught me that self-awareness and self-advocacy are rooted in respect.  By attuning to one’s child, meeting them “where they are at,” and exploring with them the “why’s” of his/her behaviors, a parent (and hopefully those involved in his/her support and care) unconditionally accepts and loves them.  Experiencing that unconditional positive regard enables individuals to accept themselves for who they are, and, in turn, be comfortable (and proud!) to inform others of their needs.  When parents, educators and therapists support individuals to understand their own needs in a respectful way, they are laying the foundation for those individuals to advocate for themselves.

How blessed I have been to work within the field of ASD for this long.  I believe that it is with the theoretical and treatment models based on development, individual differences (including sensory processing) and relationships, and the self-advocacy of so many individuals with ASD, that awareness has been promoted in a positive way.

Do preschoolers have suicidal thoughts?

A recent study published in Medscape indicated that 1 of every 10 children between ages 3 and 7 years of age exhibit suicidal behaviors and/or suicidal thoughts (SI).  The premise that children as young as preschool age may have suicidal thoughts and/or behaviors can be shocking to some.

While it demonstrates the quite valid need for attention to the mental health of young children and the early identification and intervention of social-emotional challenges for youngsters, there are a number of considerations when reading this article:

  • Do young children understand the concepts of “death,” “wanting to die,” “heaven,” or wanting to hurt themselves.  These are abstract concepts that unlikely to be fully understood both on a cognitive and emotional level.   When heaven is described to a 3-year old, it is often described as a magical, wonderful place, in which you can be with people who have passed away.    Preschool-aged children often engage in developmentally-appropriate “good guy-bad guy” (i.e., “superhero”) play in which themes of being “dead” and being “killed” are plentiful.  Parents (who were the reporters in this study) may misunderstand children’s intentions during such play.
  • Limitations of the study:  This study noted several limitations (as all scientific research studies have to some extent) that should be considered.  First, there was a small number of young children found to display suicidal ideas and behaviors.  Second, there was a recruitment bias, as the children were selected for the study based on having higher symptoms of depressive symptoms.  Third, the authors noted that the use of parent reporting may have presented a reporter bias.
  • On a related note, the finding that “Early-childhood SI was more common in boys and was highly associated with a variety of maternal psychopathology” is not unsurprising.  Mothers who display more depressive symptoms are more likely to report depressive symptoms in their  children.  This may be related to the both genetic and environmental components of depression, as well as the generally well-accepted finding that those with depression tend to view the world as more negative.  Thus, mothers who are experiencing depression may be more likely to either notice depressive symptoms or perceive their children’s behaviors or demeanor as indicative of depression.
  • This poses another implication of the study, as we understand that children of parents with psychopathology are in need of early support to promote their own psychosocial development.  Children who observe their parents to struggle with depression may be subject to their parents’ modeling of depressive symptoms.  This is especially the case for young children who likely do not realize that their parents’ struggles are not the norm.  Their parents’ symptoms may serve as models as to how they view the world and cope with stressors.  Thus, if a parent is likely to speaking negatively about him/herself or show pessimism about the world, his/her child may be more likely to do so as well.

Taken together, this study poses an important recommendation for more closely researching depressive symptomotology in young children.   The following will yield a better understanding of these children’s needs:

  • Recruit children from a broader population, including children and parents who have not previously been identified as having mental health challenges.
  • In addition to using parent report measures, include teacher report measures whenever possible, and/or conduct a direct assessment of the children, either through direct interviewing and/or projective psychological assessment tools.

 

 

Queens Parent Support Group

I am excited to moderate NAA NY Metro Chapter’s Parent Support group at my new Queens office on Wednesday, November 11, 2015, from 7:15pm-8:15pm!  Parents of children with ASD are invited to meet together to share their experiences, gain valuable information, and receive support and guidance.  Please RSVP: RSVP@nationalautismny.org. Going forward, groups will be held the first Wednesday of every month.

Address:

38-50 Bell Blvd, Suite A

Bayside, NY 11361

(718) 428-2580

The entrance is on 39th Ave between Bell Blvd and 213th St.  Take the elevator to the 2nd floor and walk down the hallway to Suite A.

For more information, see NAA NY Metro.